tag:blogger.com,1999:blog-91357287855409202592024-03-14T08:36:39.464+00:00Life is for the LivingI'm a lifestyle blogger - blogging on writing, books, travel, photography, gardening, nature and simple musings on life. Not forgetting I just happen to be a Pulmonary Hypertension survivor, Heart and Double Lung Transplant recipient and an avid Organ Donation campaigner...Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.comBlogger252125tag:blogger.com,1999:blog-9135728785540920259.post-2825826664362506252017-11-28T14:06:00.000+00:002018-01-26T12:04:15.782+00:00My Blog is Moving<br />
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Unfortunately 'Blogger' is not updating its Apps to be compatible with the latest iPhone and iPad data therefore making it difficult to continue with my blogs using the Blogger platform. </div>
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Due to this I've decided to amalgamate my two blogs - 'Life Is For The Living' and 'This Way To The Garden' and have just one blog where I can write about a broader range of topics. </div>
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I'm still going to keep both the old Blogs open for readers old and new, but will not be updating them any more.</div>
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My new Wordpress Blog, still named 'Life is for the Living', can be found on the link below:</div>
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<a href="http://kathryngrahamwriter.com/">New Wordpress Blog: Life is for the Living</a></div>
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Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-2968939073175243352017-11-02T15:24:00.001+00:002017-11-02T20:54:44.625+00:00Warming Autumn<div>
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This week saw the end of October, the clocks changing and shorter days, Halloween celebrations and the start of a brand new month. Here in Hertfordshire, we've been enjoying some late autumn sunshine and some glorious autumn colour. </div>
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It's all felt very uplifting, as I seem to have had one thing after another healthwise over this last month or two and have been confined to home on and off during it all. Firstly, I caught a bad cold and following from that a chest infection, but thankfully with a strong antibiotic I managed to shift it without my lungs being damaged any further. That was such a huge relief. </div>
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Next up came an adverse reaction to the antibiotic drug I was prescribed - the drug comes with a big warning that it can cause tendon inflammation and tendon rupture. All the drugs I have to take come with all sorts of awful warnings, so I wasn't too concerned. Basically transplant patients have to take the prescribed drugs to stay alive despite the toxic side effects. After a week on this drug though the calves of both my legs became inflamed and very painful and I had to stop the drug immediately. This is now an ongoing issue, but I'm happy it's very slowly improving. It is going to take a month or two to get back on track, but in the meantime it's a big struggle to walk and the only way to improve things is to rest up. It's just been pure bad luck and an inconvenience, but hopefully nothing to worry about too much in comparison to the lung problems. </div>
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I then managed to pick up a sickness bug - the winter norovirus - which seemed to go on for days on end because of being immunosuppressed. These types of bugs can be worrying too, as it can affect the immunosuppression drug absorption and then lead to rejection. Luckily and with much relief I managed to keep up with my immunosuppression meds and eventually shifted that bug too without a hospital visit or stay. The only good thing about this experience was that I had to stop and rest totally, so that helped my legs improve a little - well every cloud and all that...</div>
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Anyway having felt it's been a little stop/ start during these autumn months, the week started with a gorgeous sunny day and I was feeling much better, so we decided to get out in the fresh air and see some of the lovely autumn I feel I've kept missing out on. We enjoyed a few days out, Rob pushing me around in my wheelchair and with Ted in tow usually leading the way! The wheelchair has kept coming in handy over this last year and this time has been a godsend because of the situation with my legs. </div>
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I felt like a child at Christmas going around the gardens at Wimpole Hall - I think just because I'd been stuck in for days and having been worried about ending up back in hospital. It was just such a mild and beautiful day too for the time of year. We had lunch in a quaint little Cambridgeshire pub first called 'The Poachers', which was lovely and I was surprised by how many plants were still out in full flower in the walled garden at Wimpole. It was good to be out enjoying the real world again and enjoying nature - warm sunshine, beautiful warming colours and warming food. </div>
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When the weather was good again the following day, we went off to Ashridge Estate: I particularly chose Ashridge because it's a huge ancient woodland and I thought the trees would look beautiful at this time of year. We weren't disappointed and there was a reasonable disabled route through the woodland and plenty of flat roads for the wheelchair so we had a good explore around. There's also a great little outdoor cafe restaurant, where we enjoyed lunch and then later an afternoon tea - well I do need feeding up at the moment! </div>
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I'm working hard on getting myself back fighting fit now - obviously exercising and trying to push my lungs a little is a problem when I'm struggling with my legs, but I'm trying to stay as active as is possible and move around as much as I can. Rob's also been trying to feed me up with lots of nutritious homecooked dishes, so I've been spoiled rotten yet again. It seems to have been a recurring theme this year. </div>
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I feel so sorry for him with all the running around he seems to be constantly having to do - always caring for me and nursing me as well as being chief cook and bottle washer. I'm never sure who it's worse for - me or him. </div>
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It's been a really uplifting week and good to be on the mend again. Besides being out and about a little, I've also been back to my cooking again, with much relief to Rob. Here's one I cooked last night - lamb hotpot with crusty homemade bread... nice and warming for these colder and darker nights. </div>
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<br />Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-6352828969994494902017-10-18T20:10:00.001+01:002017-10-19T14:56:47.378+01:00Coughs and Sneezes Spread Diseases<div>It seems to be that time of year again, when everyone is coughing and spluttering and all sorts of cold and flu viruses are flying around; that time of year when we're urged to have flu jabs to help protect us through the winter season. I did have my flu jab all arranged, but then <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I've been having more fun and games with my health over the last few month or so and been unlucky to pick up a bad cold that turned into a chest infection. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Luckily and with much relief I've managed to shift it, but not without its problems.</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/--uiauaBRHo8/WeipNkcR1vI/AAAAAAAALf4/-sCWxnsJ0GUjk5P_19-0CjTfJDnPHbFUwCHMYCw/s640/blogger-image--2118060706.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/--uiauaBRHo8/WeipNkcR1vI/AAAAAAAALf4/-sCWxnsJ0GUjk5P_19-0CjTfJDnPHbFUwCHMYCw/s640/blogger-image--2118060706.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">A cold and chest infection is nothing to most people, but if you've had a transplant and therefore have little immune system then it can become a big threat to your health. Being immune suppressed means that your body really struggles to fight the virus and often the virus easily takes a hold and causes respiratory infections, which can become life threatening. It also takes a long time to clear any infections, as your body is unable to offer much resistance, so they tend to linger for weeks. </span></div><div><br></div><div>For lung transplant patients, it is even more dangerous and there is serious danger that the transplanted lungs can become damaged. This is a very real threat and actually happened to me earlier this year. I'd already lost twenty five per cent of my lung function due to a series of acute rejections of my lungs, then I caught a common virus called parainfluenza - it's not a strain covered by the flu jab and symptoms for healthy people are very similar to a common cold. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-7_0-lz1Ynyk/WeipJybrx4I/AAAAAAAALf0/8GoMqzs-edMBKGhOXj0QS0k2wOFLUONFwCHMYCw/s640/blogger-image-588392640.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-7_0-lz1Ynyk/WeipJybrx4I/AAAAAAAALf0/8GoMqzs-edMBKGhOXj0QS0k2wOFLUONFwCHMYCw/s640/blogger-image-588392640.jpg"></a></div><br></div><div><br></div><div>For me, it resulted in being blue lighted to my local hospital and then being transferred to Papworth Hospital, my transplant centre, for appropriate treatment, as pneumonia had took a hold in my lungs as well as the paraflu. My lung function fell down to less than twenty per cent and I was hospitalised for over three weeks. I was allowed home still on intravenous antibiotic treatment, had to be nursed by Rob and it took me months to feel better and recover some of my lung function. It happened back in March and by June I'd begun to feel much better in myself, but unfortunately only managed to recover my lung function to around fifty per cent. </div><div><br></div><div>That is the detrimental effect these bugs can have. I've been told that I'm unlikely ever to get back to having the seventy five per cent lung function I had back in February, and the hundred per cent I had only last year has become a long lost dream. </div><div><br></div><div>In many ways though, I know I was very lucky in the circumstances, as I've very sadly lost a few of my transplant friends this year to pneumonia and respiratory infections. I'm not only grateful I survived it, but grateful that I did manage to recover some of my lung function again too, as this isn't always the case for some. Although I'm quite breathless and limited now on walking, I'd been getting out and about with some help and I'd managed to put the wheelchair away again. I'd taken all the positives from this situation, that I'd come through it and was enjoying life again. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-K7FyV2NvRZI/WeiuFkP4ENI/AAAAAAAALgU/CRkVUKpBbV4daFSU-HBgSbIeX118Nrh-gCHMYCw/s640/blogger-image--164278547.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-K7FyV2NvRZI/WeiuFkP4ENI/AAAAAAAALgU/CRkVUKpBbV4daFSU-HBgSbIeX118Nrh-gCHMYCw/s640/blogger-image--164278547.jpg"></a></div><br></div><div><br></div><div>Obviously with that experience fresh in my mind still, catching another cold and it developing into yet another chest infection filled me with complete terror. I had to act quickly and my Transplant Centre did the necessary tests to identify the virus and under their direction my GP prescribed the drug needed to treat it promptly. It was a case of waiting and seeing and hoping against all hope that I wouldn't lose any more lung function. The drug - a powerful antiobiotic treatment for pseudonomas called ciprofloxacin - did the trick and cleared up the infection fairly promptly; however, part way through the course of drugs, I began to have an adverse reaction to it. </div><div><br></div><div>Unfortunately I developed tendonitus in both calves of my legs and then my left shoulder. Tendonitus and ruptured tendons is a well known side effect of the drug and it is excruciatingly painful. At the moment, it's left me unable to walk properly, but we've dug out the trusty wheelchair yet again so we're trying not to let it stop me doing things that I feel are manageable. It can take weeks or months to subside, so it's a case of waiting and seeing how things go. The bad response to the medication was just unfortunate and not life threatening though, so again, I'm counting my blessings that my lungs have managed to remain stable through this. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-c4jdPmtI7YQ/WeipRbtW7QI/AAAAAAAALf8/JFfBkXf5p38W3zHV4yMWWDNgsW_OhwNqQCHMYCw/s640/blogger-image-1322589881.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-c4jdPmtI7YQ/WeipRbtW7QI/AAAAAAAALf8/JFfBkXf5p38W3zHV4yMWWDNgsW_OhwNqQCHMYCw/s640/blogger-image-1322589881.jpg"></a></div><br></div><div><br></div><div>This latest cold has also resulted in an important stomach fundoplication operation having to be cancelled and having to cancel my flu jab. Luckily these are all being rearranged, but just catching another simple cold has managed to cause so much chaos yet again. </div><div><br></div><div>All these problems are why I try hard to avoid infections: why I'm always using hand gel and hand wipes and frantically dettoxing the house and always usually wear a scarf when I'm out in case some stranger decides to start coughing and spluttering around me. You'd be shocked how many people do this and don't even bother to put their hand over their face. It's why we say to friends and family please don't visit us if you have any infection, or why I might avoid meeting up with friends or visiting people who have infections. It's not because I'm paranoid, infection has become a real danger now in this fight to stay healthy. It really is a big enemy. </div><div><br></div><div>Despite all this though, it's so important to keep on living life to its fullest and make the most of each day, so armed with the hand gel, the dettox wipes, hand wipes, a useful scarf and a little caution, I'm trying to go out and about as normally as is possible... There's always an element of risk, but life is precious and needs to be enjoyed to the full. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Pl_N33z9ya8/Weis32d-h-I/AAAAAAAALgM/4k_d5KsJ38wVJ-iSLGWv79qaFS_gR9t1ACHMYCw/s640/blogger-image--783129834.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Pl_N33z9ya8/Weis32d-h-I/AAAAAAAALgM/4k_d5KsJ38wVJ-iSLGWv79qaFS_gR9t1ACHMYCw/s640/blogger-image--783129834.jpg"></a></div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-24208971289346215682017-10-07T10:54:00.001+01:002017-10-09T08:24:54.124+01:00Four Years On ...It's been a while since my last blog, as life has been busy over the summer and I've deliberately been giving myself some time out from some social media while I've been <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">adjusting to yet another 'new normal' with my health. My lungs aren't functioning as well now following all the health problems I've had over the last year and I've been concentrating hard on building myself back up so I can remain stable in readiness to face stomach fundoplication surgery this autumn. I'd been 'all set' and geared up with a date for it, but now it's been postponed due to a cold and chest infection. Hopefully the operation will go ahead soon though and help address some of the problems with my transplanted lungs. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-w2EDxR8QJuA/Wdn-L3Rgv7I/AAAAAAAALdM/XQWxI2jOz80QnG8Ofbhmq04ElJVnW4UFgCHMYCw/s640/blogger-image-1366319480.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-w2EDxR8QJuA/Wdn-L3Rgv7I/AAAAAAAALdM/XQWxI2jOz80QnG8Ofbhmq04ElJVnW4UFgCHMYCw/s640/blogger-image-1366319480.jpg"></a></div></div></font></div><div><div><div><br></div><div>We had building work going on over summer too, which has kept us fairly well occupied, our </div><div>conservatory being rebuilt and having a whole new makeover. Ted, our cocker spaniel, also had his fair share of health problems too and in between all my hospital stuff and building work we've been up and down to the vets all summer, until he was properly diagnosed and had surgery to remove a grass seed that had travelled through his paw and embedded itself inside his leg. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-kTfsOzhiGG0/Wdn-H73fxpI/AAAAAAAALdI/aAz6k4qtZXkKeHVwyIKsdgo-ksb_eOGBACHMYCw/s640/blogger-image--1549997905.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-kTfsOzhiGG0/Wdn-H73fxpI/AAAAAAAALdI/aAz6k4qtZXkKeHVwyIKsdgo-ksb_eOGBACHMYCw/s640/blogger-image--1549997905.jpg"></a></div><br></div><div><br></div><div>All's well that ends well and Ted <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">is fully back to normal and it's a joy to see him running around the garden and park and playing with his friends again. We managed to escape back to the Lake District for a few lovely days in early September and although it seems to be one step forward and two steps backwards with my health at the moment, I've been been enjoying the autumn sunshine and recuperating in my new conservatory, enjoying the peace and tranquility now the builders have finally gone. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-twlIXSHeWeM/Wdn-PfZTw2I/AAAAAAAALdQ/7xAFjgfuAhQ7OfTYtr62siWyAwjAFZ9JwCHMYCw/s640/blogger-image--1348479799.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-twlIXSHeWeM/Wdn-PfZTw2I/AAAAAAAALdQ/7xAFjgfuAhQ7OfTYtr62siWyAwjAFZ9JwCHMYCw/s640/blogger-image--1348479799.jpg"></a></div></div></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Last weekend, we celebrated my fourth transplant anniversary - September and autumn will always feel such a special and emotional time for me and my family and we are all forever grateful to my donor and their family for giving us all this extra time together. We've been able to do so much as a family since my transplant and celebrate so much together. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-1GRv3Pcfq5A/Wdjon2qOA0I/AAAAAAAALc4/ku4jZ5tqGI0q0QQ-5hqE60vfiQid_yW0gCHMYCw/s640/blogger-image-1106599227.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-1GRv3Pcfq5A/Wdjon2qOA0I/AAAAAAAALc4/ku4jZ5tqGI0q0QQ-5hqE60vfiQid_yW0gCHMYCw/s640/blogger-image-1106599227.jpg"></a></div></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">This last year has seen some of the hardest </font><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">and ongoing struggles with my lungs and health - it's felt like there's been a whole circus going on inside my lungs at times, but somehow we've managed to keep on overcoming the problems together as a family and with the strong support of the Transplant Team and friends. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-D3GKvpTS01c/WdoMUSA9ksI/AAAAAAAALdw/-RJJPCWeU_IMENfhPbCCyFRQzemUREwEACHMYCw/s640/blogger-image--1163654700.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-D3GKvpTS01c/WdoMUSA9ksI/AAAAAAAALdw/-RJJPCWeU_IMENfhPbCCyFRQzemUREwEACHMYCw/s640/blogger-image--1163654700.jpg"></a></div></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">All these struggles have left me with more fragile health and poorer lung function and exercise capacity, but somehow this last year has also been the year that has managed to surpass anything I had dreamed of pre transplant and I've been able to enjoy the most precious of moments. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Mi9uHhuGZJc/Wdn-TZx1DtI/AAAAAAAALdU/9WQ7qS-Fq0MnCPH53bUlCybl0J-0F4YXQCHMYCw/s640/blogger-image--283509660.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Mi9uHhuGZJc/Wdn-TZx1DtI/AAAAAAAALdU/9WQ7qS-Fq0MnCPH53bUlCybl0J-0F4YXQCHMYCw/s640/blogger-image--283509660.jpg"></a></div></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Before Christmas I saw both Sarah and Rose graduate and this summer I was able to see Rose complete her teacher training and this September start in her first teaching post. These are things that I didn't ever think I'd see when I first fell ill and were things that flashed up in my mind that I would miss out on, having being given only a short time left to live. Four years on, I've been able to see these things actually happening for real and with much gratitude to my donor. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-fErWKVtWjuU/WdoMXV83VOI/AAAAAAAALd0/ubJBraCBPs0uE4KOMp3IlC-M8E3LY6qqQCHMYCw/s640/blogger-image--1941435762.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-fErWKVtWjuU/WdoMXV83VOI/AAAAAAAALd0/ubJBraCBPs0uE4KOMp3IlC-M8E3LY6qqQCHMYCw/s640/blogger-image--1941435762.jpg"></a></div></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">And then came baby Freddie. </font><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Back when I was sick, even contemplating grandchildren was beyond a dream and felt too far ahead in the future, but this has been the year that our first grandchild was born. My health struggles somehow pale into some insignificance when I spend time with Freddie.</font><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> Sarah and Freddie visit regularly and it's been wonderful to spend so much time with him, watching him change and grow over the months. Sometimes all the health issues help emphasise just how precious some moments are and what is most important in life. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/--bL_GTorVSM/WdoMPCO-csI/AAAAAAAALdo/dcC-GoRZ8NEYInbgqZrOG-LVw0QPAAHXgCHMYCw/s640/blogger-image--149784390.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/--bL_GTorVSM/WdoMPCO-csI/AAAAAAAALdo/dcC-GoRZ8NEYInbgqZrOG-LVw0QPAAHXgCHMYCw/s640/blogger-image--149784390.jpg"></a></div></div></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">It's been another exceptional year to celebrate and now I'm starting year five. I cannot quite believe where time has gone since my transplant or since my diagnosis of Pulmonary Hypertension or how life has moved on in new and unexpected directions yet again. </font></div><div><br></div></div></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-pl11XWqeu98/WdoMRyJxxQI/AAAAAAAALds/-A2W-h0LfT8UT750DdGziypivSV-CcYfACHMYCw/s640/blogger-image-1989041706.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-pl11XWqeu98/WdoMRyJxxQI/AAAAAAAALds/-A2W-h0LfT8UT750DdGziypivSV-CcYfACHMYCw/s640/blogger-image-1989041706.jpg"></a></div><br></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com1tag:blogger.com,1999:blog-9135728785540920259.post-79491962698362402062017-06-20T17:54:00.001+01:002017-06-26T11:43:07.629+01:00The Fitbit<div class="separator" style="clear: both;"><div class="separator" style="clear: both;">I can't remember the whole context of the conversation, but someone recently made a comment to me about Fitbits and personal fitness trackers. It was something along the lines of 'and these people who wear these wrist band things and are constantly checking on their fitness all the time...' The person wasn't so impressed with the idea of fitness trackers and disapproved of them. I found my eyes casting down towards my wrist and staring at the Fitbit I was wearing. Should I be embarassed I'm a Fitbit wearer and admiit that I'm actually quite a big fan of the fitness tracker? I'm not totally obsessed with my Fitbit, but my fitness is important to me, however limited I become and I've found my Fitbit a very useful tool to measure what I'm up to. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I bought my Fitbit at the airport a couple of years after my heart and double lung transplant, we were en route to Rome. We were about to embark on a three week trip around Europe. Rob and I enjoy visiting cities and I'd always been curious about how far we actually walk when we are exploring - I always thought it may be much further than I imagined. That was my main motivation for buying it, together with the fact I'd just returned from taking part in the British Transplant Games and keen to build up my fitness even more, was trying to aim to walk the NHS recommended 10K steps per day to help me. I thought the Fitbit would help me to track this target. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-d43m42ZItDY/WUlUWNmqAHI/AAAAAAAALSQ/0DtVHoTBcs8gust-56yvFYIbaaSJ8oR1gCHMYCw/s640/blogger-image--1983237369.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-d43m42ZItDY/WUlUWNmqAHI/AAAAAAAALSQ/0DtVHoTBcs8gust-56yvFYIbaaSJ8oR1gCHMYCw/s640/blogger-image--1983237369.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">On the holiday, I found that yes, we did walk far more than I might have guessed, exploring museums, galleries, parks, shops and ambling around streets and I had a great headstart on my new 10K per day target. Way exceeding this target most days, I returned from holiday feeling fit and well and quite pleased with myself and determined to try and keep up my 10K steps using my Fitbit to track my progress. </div></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Recently there's been research and press reports suggesting that 10K steps per day may be too many steps for some and may be dangerous to their health and fitness. Well that's just common sense surely? If you you've been unwell and recovering from an illness or an operation then it may not be sensible thing - things need to be taken more slowly. Having been chronically and terminally ill before my transplant I know that the 10K steps wouldn't ever have been achievable for me then. It was still important to walk, move around and keep as fit as possible in order to withstand the ongoing challenges of poor physical health though.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">After my holiday, wanting to maintain that healthy holiday feel, I continued with my 10K steps target and using my Fitbit tracker to keep a measure of how I was doing. I tried to motivate myself with new ways to achieve it and even decided to have a dog, so I had no excuses to stop me walking every day. Before Ted, my cocker spaniel arrived though, my health took a dip and my 10K step target dwindled away while I was poorly for a few months with CMV virus and then recovering afterwards. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">The Fitbit became really useful in helping me gauge how far I could manage to walk, it helped me readjust targets and aim for more as I recovered and started to get back on my feet again. It helped motivate me in recovery, as I could see a difference in how much I was walking each week and over each month. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-7clmWESrElg/WUlVwmb18FI/AAAAAAAALSg/HrAacbGCapYtbY5ADazRdNmUQrqyATZMwCHMYCw/s640/blogger-image-1365936096.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-7clmWESrElg/WUlVwmb18FI/AAAAAAAALSg/HrAacbGCapYtbY5ADazRdNmUQrqyATZMwCHMYCw/s640/blogger-image-1365936096.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I was lucky to find myself back to full fitness, with Ted my cocker spaniel in tow, smashing the 10K steps together and becoming the strongest I'd been for years. My lung function on my regular clinic visits had always been pretty good, at 90%, but suddenly my tests were showing 100% lung function, which was totally amazing after what had been a big setback and for someone who'd undergone a lung transplant. </div></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Although I managed to achieve this, there were to be more trials and tribulations with my health unfortunately due to the virus that originally set me back. It reactivated and led to a period of acute rejections with pseudonoma infections. With my new lungs now damaged and working at 75% it was back to the drawing board once again. I used my Fitbit to challenge myself with new adjusted and lowered targets aiming to build myself up slowly but surely. I hadn't managed to improve on this when I caught a bad bout of flu alongside a form of infectious pneumonia.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This time recovery has been a long slow road - there had been too much strain on my lungs this time coming on top of the previous acute rejections and organising pneumonia, which my lungs are still and were at this time being treated for on top of the new problems. My lungs were completely struggling and the doctors didn't either bother to measure my lung function while I was in hospital, as I couldn't even breathe properly let alone do blows for tests. There were no steps happening, but the Fitbit was actually useful as a watch as time ticked away in the room I'd been isolated in. I was even surprised when I realised how much I'd actually been using it purely as a watch all this time. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">During these periods of illness and dependance on higher doses of steroids, my sleep was poor, often interupted and I was suffering from insomnia. The Fitbit helped me gauge my sleep patterns and see that as I improved, my sleeping although not perfect was improving. Again, this was reassuring and encouraging. </div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A few months on and it's felt a slow progress, but using the Fitbit, I can see in black and white how far I've come. After about a month at home, I was managing around 1K steps a day and 7K steps a week, only a fraction of what I'd been used to, but it was something and a good start. I figured the more I could move, the more I could help clear my lungs of infection and help them to work again. Weeks on and I could see this improve more and more - another month and I was managing 2K to 3K steps a day, around 17K steps a week, undertaking small walks and activities over the day. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This helped me confirm in my mind that things were improving, that I was actually making some progress - sometimes it's hard to see how you are doing because of the frustration of not being able to do what you could once manage. It can feel one step forward and ten steps back on a bad day. A few months on and I'd built my lung function up to 40%, which was still very limiting with breathlessness, but I was walking again and managing to be out and about with family and friends and I was so grateful for that and encouraged and motivated by the fact that there was some improvement. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-7eDGY_th7aE/WUlTvfu9F3I/AAAAAAAALSE/BXy1TK42gwsXm6WZHuCvTzmhyzHF49dhQCHMYCw/s640/blogger-image-1096347332.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-7eDGY_th7aE/WUlTvfu9F3I/AAAAAAAALSE/BXy1TK42gwsXm6WZHuCvTzmhyzHF49dhQCHMYCw/s640/blogger-image-1096347332.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Following some further additions and tweaks in medications I was back in clinic this week to see how I'm getting on. Fortunately following a few medication changes I'd been feeling better still and able to do more and using my Fitbit data I was able to say I'd gone from only being able to do a thousand steps or so each day to now being able to do 4K steps on most days and had done 28K over the last week. I was delighted when my lung function results reflected an improvement too and showed my lung function had increased and is at 50% function now. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">There is still a way to go yet back to fitness yet, my consultant has explained that it's unlikely I will be able to reach the high lung function I once had, but we are all encouraged there's a significant improvement and I'm going to carry on using my Fitbit to help me increase my walking further if I can and hopefully in turn push my lungs further and squeeze that extra bit more from them. For me, I've found that using a Fitbit has been a very positive thing. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">What are your thoughts on Fitbits? </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-60272995079477610172017-06-01T21:56:00.002+01:002017-06-02T08:04:22.573+01:00It's What You Can Do, Not What You Can't<div>
Do you ever collect things? I have a few things I like to collect and as you can see from the pictures of my fridge and freezer, fridge magnets are one of them. They have over the years become much more than a few tacky fridge magnets stuck on a fridge door though. </div>
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A few of them are left over from when the girls were tiny and growing up - we would always have something stuck on the fridge during those times from drawings to ABCs to exam timetables and revision notes... The few remaining ones are always happy reminders of these times. <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">A few years prior to my falling ill with Pulmonary Hypertension we began to travel more and more together as a family and I began to pick up fridge magnets wherever we went as little momentoes of our travels. Again the fridge magnets remain happy reminders of these lovely and precious times. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Then out of the blue came the illness with a very poor prognosis and a long wait for a heart and double lung transplant. Life changed dramatically. It became a fight to survive and a fight to enjoy and make the most of out every moment. During this time, as a family we tried hard to go out and about as much as we could - afternoons out, days out, holidays in the UK - whatever we could manage with my ever changing needs and hospital visits. </span><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Everything we managed felt like a big achievement and I avidly began collecting more and more fridge magnets as momemtoes that I was able to still go out and do things in these difficult circumstances. We endeavered to live life to its fullest while I could and the fridge magnets became a reminder of this, especially on down days when I was too poorly to go out.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">A glimpse of the colourful fridge and all the magnets that represented so many wonderful memories we'd made together would inspire me on to keep wanting more of life, and to keep on making more precious memories. The fronts of the fridge and freezer filled up with more and more magnets, more happy memories of precious times together when time was running out. Focusing </span><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">on all those things I could do, rather than all those things that I couldn't became a real priority. So much had been so cruelly taken away, but the ever growing magnets on the fridge always showed how much I could still do and how much there must still be out there to enjoy. </span><br>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Life changed again with my heart and double lung transplant and the generosity of my donor and their family. I was given my second chance and suddenly free to travel the world again. We carried on making the most of those precious moments and making the most of my better health. We were constantly physically pinching ourselves every time we visited somewhere new and I didn't have to struggle any more. There were more fridge magnets added to the big collection; more memories; more reminders of how special life is. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Now I've hit problems with my transplanted lungs, as they've been hit with one thing after another recently, which has significantly reduced how they can function. They've been hit with recurrent CMV infection, acute rejection episodes, pseudomonas infections, double pneumonia, parainfluenza and silent damage by stomach acid. Their deterioration means I'm very breathless and feel weak when I try and move and walk.</span><br>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I've just been back to clinic and the positive news is they have remained stable over the last four weeks since I was last checked so that is good news for now at least. I'm in the middle of more tests and trying new medications to help keep things in balance and under control. It's also highly likely I will be having some stomach surgery soon after I have met with the gastro surgeon in early July. There are a few mountains to climb yet, but it's all in the aim of keeping me stable and preventing more damage to my lungs and even giving the opportunity for things to improve if I'm really lucky. </span><br>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">With all this happening at the moment, we recently had to cancel a holiday we'd planned. We were supposed to be going on a cruise to the Norwegian Fjords visiting many new places and yes probably collecting more than a few more fridge magnets too. At the time of cancelling it, I was practically bedridden and so poorly that it really didn't matter and I didn't really care. I recall thinking I would be so grateful if I could just walk down the garden again. I'm managing that now and I'm so pleased and relieved I can do that and even get out and about now with help. There are times when it's not all about doing 'big' things and it's brought home to you starkly yet again, that the simplest of pleasures are the most important ones. </span><br>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">The fridge magnets are always a bright and optimistic reminder each day that life can still be lived to the full, whatever the circumstances - even in those of feeling unwell and with limited mobility. I just need to adapt again like I've done before. As I glimpse them each day they shout out, 'You can still go out and do things, discover new places and enjoy yourselves.' We have to do it differently though and consider what is manageable such as whether a place is wheelchair friendly and asccessible; whether it is flat to manage a short walk or has benches or seating to sit and rest on; whether there's refreshments and loos or not, whether there's higher infection risks. We have to think of timings so I can enjoy outings when I feel my best during the day, allow for tiredness and rest periods and be ready to change plans and ideas at the last minute if my health so dictates. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Under our own steam and pace I know we can still do so much and enjoy life. Since I've been well enough to go out and about again, that's what we've been trying hard to keep on doing. It is about focusing on what I can still do and not fretting and dwelling on what I can't. There's not much point on wasting any time and energy dwelling on the 'can't dos' - there really isn't time or energy for it anymore. I've already drawn up a list of places I want to visit locally, we've already enjoyed a quiet and relaxed break in the Lake District and proved to ourselves that we can get out and about now and we're making more plans to escape somewhere nice soon in between all the next round of tests and clinic visits.</span></div><div><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"><br></span></div><div><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I expect our fridge magnet collection to continue to grow and grow this summer. Hopefully we won't run out of space, but if we do that will be a good thing.</span><br>
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<br>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-29346526154105982352017-05-12T20:24:00.001+01:002017-05-30T08:05:54.787+01:00National Nurse's DayHaving been in and out of hospital and needing to go to my Transplant Clinic even more regulary than usual lately, I couldn't let National Nurse's Day and Week go by, without giving the nurses who look after my specialist care a mention. How would I have got through the latest roller coaster of the last seven months without them? And that's not even thinking about the last seven years. <div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-XlWEwPQfd-M/WRYLu1lmCLI/AAAAAAAALDY/xcqzCK7xgFQNlTxcSAQOSWaELkOOVNOUQCHM/s640/blogger-image--746033129.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-XlWEwPQfd-M/WRYLu1lmCLI/AAAAAAAALDY/xcqzCK7xgFQNlTxcSAQOSWaELkOOVNOUQCHM/s640/blogger-image--746033129.jpg"></a></div><br><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div>Firstly, there's the hard work of my specialist Transplant Nurses that I'm so grateful for. It's not only their hard work in looking after me on both the ward and in clinic, where they sort my medications, tests needed and test results, but the actual 'TLC' that they do it with. Those little moments when they take you to one side during a busy clinic and ask if you are doing ok when they don't have to do. The little extra touches when they can see you aren't doing so good and they whisk you in a side room and give that extra time for you that they hadn't planned for, so you can pour out your troubles and they can reassure you. It's like having an extended family. </div></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-omH4qxYFZIw/WRYLyfVrU6I/AAAAAAAALDc/Xu_L9IcEKzEAwKeD2LXy5HlkZAwsT_ESACHM/s640/blogger-image--93306023.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-omH4qxYFZIw/WRYLyfVrU6I/AAAAAAAALDc/Xu_L9IcEKzEAwKeD2LXy5HlkZAwsT_ESACHM/s640/blogger-image--93306023.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then there are the nurses who run the ward I regulary stay on. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I know many of the nurses and they know me, as I've been a regular visitor to the ward for nearly seven years now. It's always a huge relief during a health crisis to arrive on the ward and see a familiar and friendly face smiling at me. Often I will feel anxious if I'm unwell, but my nurses will put me at ease and make me feel safe and secure. I feel assured that I will be well looked after and can relax a little more. They make it like a second home - a save haven when the rollercoaster is running too high and fast. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-_Kq0PFtvmI0/WRYL59AHIDI/AAAAAAAALDk/llLvBds_E9Q38eGuPIbtuB2bheecyfB2ACHM/s640/blogger-image--851440854.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-_Kq0PFtvmI0/WRYL59AHIDI/AAAAAAAALDk/llLvBds_E9Q38eGuPIbtuB2bheecyfB2ACHM/s640/blogger-image--851440854.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So it's a massive thank you to all the nursing staff, who are so dedicated and committed to make such a difference for us patients, who need life long and specialist care. Hospital is a part of our lives and our nurses make such a huge difference. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And ... a big 'shout out' to everyone in the nursing profession for everything they do for their patients to help make their lives more comfortable during difficult and frightening episodes in their lives and for helping to save lives. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cAHYW3kxHLE/WRYL148ns_I/AAAAAAAALDg/EvW8ScK2Dy8JFmhEG7w8psT5S0UHzshKgCHM/s640/blogger-image-615256291.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cAHYW3kxHLE/WRYL148ns_I/AAAAAAAALDg/EvW8ScK2Dy8JFmhEG7w8psT5S0UHzshKgCHM/s640/blogger-image-615256291.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><br></span></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-63521727947711666872017-05-07T10:55:00.001+01:002017-05-22T19:27:25.624+01:00National Walking Month<div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jUJ007ZnFSg/WRYgCmyJjQI/AAAAAAAALEM/qJDXC3t_94kVXRBYnINWsIAOG5-vq0oYwCHM/s640/blogger-image-600548449.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jUJ007ZnFSg/WRYgCmyJjQI/AAAAAAAALEM/qJDXC3t_94kVXRBYnINWsIAOG5-vq0oYwCHM/s640/blogger-image-600548449.jpg"></a></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">May has now been designated 'National Walking Month'. With the weather becoming fairer and warmer and the days beginning to grow longer, what better month can there be to get out there walking?</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Walking is increasingly becoming a very popular and a highly recommended form of exercise. It's free and the majority of people are able to walk, whatever the varying pace and length they can manage. It's a known fact that it helps strengthen the heart and reduces the risk of heart disease, can help to keep the lungs strong and strengthen the body's muscles. It can also help burn those calories and increase the body's metabolism, therefore uplifting mood and motivation. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cQRCsZZ8ZTg/WRYegMy9oXI/AAAAAAAALD0/sAACm02Be_YrN6oyQoKC308lMza9ExIOACHM/s640/blogger-image--36250968.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cQRCsZZ8ZTg/WRYegMy9oXI/AAAAAAAALD0/sAACm02Be_YrN6oyQoKC308lMza9ExIOACHM/s640/blogger-image--36250968.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Walking has always been something I've enjoyed. As a child, I can always remember going out for long country walks with the dog: those 'Enid Blyton days' sort of memories, where we would walk with family and friends, picnic by rivers and lakes and paddle in streams. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">As a young adult, I had my own dog - a staffie called Kizzy. She was a great excuse to be out and about in the great outdoors - and forcing me to go out and walk when I didn't always want to! Then came the children and the walking continued, as we often enjoyed walks together, especially on holiday on the coast or in the countryside. They weren't always too keen when they were teenagers, but now they're adults, they seem to have acquired my love for walking thankfully. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-sxiA3c9LRiQ/WRYgGcD3q0I/AAAAAAAALEQ/f-X3TCiO02kR0NfD5wt0EUa94KiV9iC7gCHM/s640/blogger-image-2092394809.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-sxiA3c9LRiQ/WRYgGcD3q0I/AAAAAAAALEQ/f-X3TCiO02kR0NfD5wt0EUa94KiV9iC7gCHM/s640/blogger-image-2092394809.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">When I was diagnosed with Pulmonary Arterial Hypertension seven years ago, my walking had to slow down drastically, as my heart and lungs weren't functioning properly, but I still kept myself 'moving' as much as I was able. I used a walking stick often, to help me to stop and rest a moment and catch my breath. I used a wheelchair to help me stay out longer and see more in between short walks. It helped give me some respite, so I could get my energy levels back to a point that I could manage more short walks. </div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;">The <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">illness didn't stop me walking, I just had to walk very cautiously and slowly and for short lengths. I knew though, being so seriously ill, it was so important to keep moving or even just to stand. I needed to keep as strong as I could; keep some strength in my muscles; keep myself motivated,; minimise the stress of the illness and keep my mind calm. A long wait for a heart and double lung transplant beckoned and I needed the physical and mental strength to cope with that. </span></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-zbtSPYKZRVU/WRYf27-nc5I/AAAAAAAALEA/XqQANlaEpbkVC4rVfKP2ZzOGTge2PTj5QCHM/s640/blogger-image-738587653.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-zbtSPYKZRVU/WRYf27-nc5I/AAAAAAAALEA/XqQANlaEpbkVC4rVfKP2ZzOGTge2PTj5QCHM/s640/blogger-image-738587653.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then came my heart and double lung transplant and walking become an even more important and prominent feature in my life than ever before. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">During the long two year wait for my transplant, the thought of the chance to walk properly again without fear of heart failure, breathlessness and passing out became the greatest motivator during that dark, long and arduous period. The dream of taking a proper walk once again, walking some of my favourite walks, walking in the country, walking by the sea... that dream of being able to walk properly again kept me full of hope.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">During all that period of illness, I realised how we all take such a simple thing like walking for granted - we don't even notice we're doing it. It's only when something precious like this is abrubtly taken away, when you realise what a gift it is. A gift that most of us don't even question or think about. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-brDPygg_meA/WRYgNwvP3RI/AAAAAAAALEY/wdcG6WKvv6cbBhSvuVWFaRDdQWFl-L8hwCHM/s640/blogger-image-1807982053.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-brDPygg_meA/WRYgNwvP3RI/AAAAAAAALEY/wdcG6WKvv6cbBhSvuVWFaRDdQWFl-L8hwCHM/s640/blogger-image-1807982053.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">In the aftermath and trauma of my heart and double lung transplant, I had to relearn how to walk again as part of my physiotherapy. The change in my health after that saw me take those first few steps, to walking around my hospital room, then down and around hospital corridors and stairs. I set my sights on building my strength again, a main focus being I could live my dream and go for those long country walks once more. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Vkj52onw_uE/WRYgYvn4hxI/AAAAAAAALEg/3XaXRaWVUX4oJdB94qjuUIpPPEDP-H3IwCHM/s640/blogger-image--344938784.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Vkj52onw_uE/WRYgYvn4hxI/AAAAAAAALEg/3XaXRaWVUX4oJdB94qjuUIpPPEDP-H3IwCHM/s640/blogger-image--344938784.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Soon within months after my transplant I was taking those lovely long walks again, walking for miles in the countryside, by the seaside and coast and travelling the world and walking for miles exploring around cities. I would continually stop and pinch myself at the miracle of being given a second chance to be able to do this again. Being able to walk and go out independently felt such a wonderful thing - even walking around Tescos pushing a full shopping trolley felt amazing! </div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-QalA-TCyUrE/WRYf-lq7qSI/AAAAAAAALEI/j1P0AFTZ3ZsCA6I4GGz9YF9UKtn9rNFfQCHM/s640/blogger-image--1094288200.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-QalA-TCyUrE/WRYf-lq7qSI/AAAAAAAALEI/j1P0AFTZ3ZsCA6I4GGz9YF9UKtn9rNFfQCHM/s640/blogger-image--1094288200.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then along came Ted, our beautiful cocker spaniel. I knew I needed to keep up my fitness to maintain my health post transplant. Life and health post transplant can be very difficult as well as wonderful. There is always a balance of drugs to be maintained: immunosuppression drugs to stop the body rejecting the 'foreign' transplanted organs; drugs for infection prevention as there's little immune system due to the immunosuppression; drugs to counteract the serious side effects of the drugs such as high blood pressure and kidney failure. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">As I loved walking and being outdoors so much, this had become my main form of exercise and I knew having a dog would motivate me even more to venture outside and walk a few times a day. Unfortunately, after we had chosen Ted our new puppy and before we brought him home, I fell seriously ill with a virus and was hospitalised for nearly a month. In the meantime Rob brought Ted home and when I came out of hospital, he was firmly established as part of the family. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I was exhausted, fatigued and weak and unable to walk far and Ted was a small puppy only able to do short five and ten minute walks at a time at first. We learned to walk together, step by step. Me building up my fitness, Ted building his strength and muscles. Together we became stronger and walked further and further until months later Ted was managing long country walks and I was back strong and healthy again. Thanks to Ted, I felt I was healthier and stronger than I'd ever been in my life before. In optimum health. All because of walking. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-TpxqN53qh8s/WRYgKK6h-TI/AAAAAAAALEU/wOYrAkT_ve0L1mocnrXGfdA2azEJpkVZgCHM/s640/blogger-image-468271911.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-TpxqN53qh8s/WRYgKK6h-TI/AAAAAAAALEU/wOYrAkT_ve0L1mocnrXGfdA2azEJpkVZgCHM/s640/blogger-image-468271911.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then last summer came more trials and tribulations of living on immunosuppression and trying to avoid infection. The virus I'd had at Christmas that had made me so poorly, reactivated itself and my immunosuppression needed to be lowered and adjusted to cope. I wasn't hospitalised this time, but it made me very unwell again for a few months and although I managed to keep walking each day, I was unable to manage as much as I'd been doing. But continuing the walking each day helped me keep back on track. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">In autumn, as a consequence of the virus, I found out that my body was rejecting my lungs due to lowering the immunosuppression. I suffered an acute rejection episode and was hospitalised again for treatment. This treatment worked and stopped the rejection, but I was unlucky, as it was discovered another type of acute rejection was occuring in another part of my lungs and then treatment had to be given for that. I also had organising pneumonia in my lungs, which activated with the rejection problems. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">My fitness suffered again and I tried to manage a short daily walk with Ted to build myself back up again. We kept on trying each day, little steps again, short walks around the park behind our home, as I tested myself and my strength. By the New Year, we were walking twice a day again, but this time I was much more breathless and although I could walk again, I needed to do it at a slower pace and needed someone with me to help manage Ted. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Xn0IFMyalCI/WRYf6-eW4nI/AAAAAAAALEE/iSsrGqggkAo1qYsRL3x9_TYkbvEAhN8cACHM/s640/blogger-image-808728689.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Xn0IFMyalCI/WRYf6-eW4nI/AAAAAAAALEE/iSsrGqggkAo1qYsRL3x9_TYkbvEAhN8cACHM/s640/blogger-image-808728689.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">My consultant had advised that this breathlessness might improve if I could keep on building my fitness up. I was working really hard on walking out with Ted each day, Rob coming with us, trying hard to increase my stamina and breathing capacity. I was grateful that I'd got myself back to this level of fitness and very hopeful that I'd build myself back up and improve it. Walking every day felt key to this and helped keep my spirits up. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">March and being a little more vulnerable, I picked up a simple cold. I carried on trying to move and walk to help prevent it getting into my lungs, but unfortunately that happened and I was hospitalised with pneumonia and then subsequently diagnosed with flu as well. Seven weeks on and my lungs have now taken a huge hit. There are also a few problems that have been identified from the episodes of rejection I experienced before Christmas that need sorting, which may involve future surgery. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I'm slowly making progress from being unable to get out of bed to now getting out and about once more with the help of a wheelchair for longer outings and walking stick to keep my steady while I struggle with breathing when I walk. My breathing is very poor and I'm trying to keep mobile and have a short walk each day to build up my fitness and lung function. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Walking has now become more important than ever to me at the moment. It's my daily physio session: if I can keep walking and moving, I can keep hoping that things will improve and my lungs might get better. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">National Walking Month has come at a perfect time for me. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">It's May, a beautiful time of year and there's a whole summer ahead to try and recover. </span></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-F7DH4fZG1Vg/WRYgR44dDWI/AAAAAAAALEc/LBOcmhyPCN847fdi7zv7WFDH6not5fASQCHM/s640/blogger-image-746008231.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-F7DH4fZG1Vg/WRYgR44dDWI/AAAAAAAALEc/LBOcmhyPCN847fdi7zv7WFDH6not5fASQCHM/s640/blogger-image-746008231.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div>Posters from 'Living Streets' (UK charity for every day walking) </div><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-67712938523194460972017-05-04T18:36:00.001+01:002017-05-06T09:36:07.309+01:00Books And More Books<div>Being in hospital for a couple of weeks and then since being home, having to take time out to recover, I've had plenty of opportunity to catch up on my reading. I'm one of those people who cannot walk past a book shop without popping in and coming out with an empty purse and a pile of books. I've always done it. Then I'll pop on my Kindle from time to time to search out a best seller or latest book release and end up downloading a few too many books than I'd planned for. Hence, I'm never up to date with my reading and doubt I ever will be, because I buy books faster than I can ever read them. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Here are a few of the books I've been reading from my book shelf over this last week or two. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I'll start with Donna Tartt's 'The Secret History'. This was a birthday gift, which I was really pleased with, </font><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">as I loved her book, 'The Goldfinch', and I always had the intention of reading more of her books and just hadn't found the time to get round to it. I couldn't put this book down. Set in New England, it tells the story of a closely knit group of classics students. It is narrated through the eyes of one of the students, who reflects on a murder within the group and explores the the circumstances and the lasting effects. It has been proclaimed as a 'whydunit' rather than a 'whodunit' detective mystery and for me I'd say it's a must read.</span></div><br><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-N4nuumOXJbE/WQtmlpsfbWI/AAAAAAAALAs/IAJYvp16T1EprS2kGWP0hD57M-H21QRWACHM/s640/blogger-image-26553066.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-N4nuumOXJbE/WQtmlpsfbWI/AAAAAAAALAs/IAJYvp16T1EprS2kGWP0hD57M-H21QRWACHM/s640/blogger-image-26553066.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">'The Loving Husband' by Christobel Kent - I picked this one up recently, as it's a 'Sunday Times Bestseller' and a recommended 'Richard and Judy Book Club' read. It's a good one for those of you who like the current trend for psychological husband and wife thrillers like 'Apple Tree Yard' and 'Gone Girl'. It's set in the remote Fens, where Fran Hall and her husband Nathan, together with their young family are making a fresh start. Fran wakes one night to make a devastating discovery... I'll leave you to read and find out the rest if this type of book takes your fancy. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">'The Book Thief' by Markus Zusak - well, what can I say? This one has been on my 'to read' shelf for quite a while. I think at the time I bought it, I'd had a spate of reading books set in the First and Second World Wars (this one is set during the Second World War in Nazi Germany) and I decided to leave it for a while, as I like to vary my reading genres from book to book as I read. I think I'd been waiting for what felt like the right time to read it. Was it worth the wait then? The answer to that is a big 'yes' and it's an absolute 'must read'. Unusual in that the story is narrated by 'death', it follows the life of a young girl Liesel as she is exposed to the horrors of Nazi Germany. Buy and read it now. I don't know why it took me so long! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-S5Xiaq8qyko/WQtmo2oHBCI/AAAAAAAALAw/KfePVi869tEjqV1k1873c5X-G3qi5PPJACHM/s640/blogger-image--502124025.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-S5Xiaq8qyko/WQtmo2oHBCI/AAAAAAAALAw/KfePVi869tEjqV1k1873c5X-G3qi5PPJACHM/s640/blogger-image--502124025.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">'The Seige' by Helen Dunmore. I picked this book up in a National Trust second hand book shop - these book shops are well worth a browse for a bargain. I bought it purely because I'd already enjoyed reading a few of this author's other books, so thought it would be worth a look. Again, it's been sat on my bookshelf for some time, but somehow I decided to pick it up and give it a try. And I'm pleased I did. Another historical novel, set during the 'Seige of Leningrad' in the Second World War and following the lives of four ordinary people, united by love and fighting for survival. This book had me researching further into the history of St Petersburg - it actually left me wanting to visit this city with its powerful history and architecture that's brought to life in the book. Maybe one day sometime...</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">'A Noble Radience' by Donna Leon. Donna Leon is an American crime writer and most of her books are set in or around Venice and that's why I enjoy this author's books so much and especially her series of books about Commissario Brunetti. Brunetti is a police detective solving crime mysteries in Venice. Venice is one of my favourite places and I enjoy reading a book that is set in a foreign place <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I've visited. I'm slowly working my way through the whole series of the Brunetti novels and enjoy the characters and families in the books and the vivid descriptions of Venice and Venetian life. I always have the next few books in the series on my book shelf ready to pick up just in case I fancy a little wander around Venice. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-OX5crVFt0lc/WQ2GyFVI0XI/AAAAAAAALBA/7ua16OTuNNgNRyyaUQMl88UAiSnPpmjmgCHM/s640/blogger-image-2037581559.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-OX5crVFt0lc/WQ2GyFVI0XI/AAAAAAAALBA/7ua16OTuNNgNRyyaUQMl88UAiSnPpmjmgCHM/s640/blogger-image-2037581559.jpg"></a></div><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">'Body Surfing' by Anita Shreve. I've read quite a few of this author's books - again I picked this one up in a National Trust second hand book shop for a bargain knowing I usually enjoy this author's work. I enjoy Shreve's easy style in how she unfolds a story. Her stories are usually about emotional and complex family relationships. In 'Body Surfing' she weaves her story around the character Sydney, a young widow, and how she is drawn into another family's destructive web of old tensions and divisions. It's well worth a read. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">What have you all been reading recently? Can you recommend any more good books? I'm always on the lookout for a good book and especially at the moment as I'm still slowly recovering from the pneumonia and flu infections I had recently, so need to pace myself and rest often. Plenty of excuse for snuggling down with a good book!</span></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Ek35gyWJ_To/WQ2JSIQq8OI/AAAAAAAALBQ/MlVt4ffk0Pk5ZaOy00Z6GGz20IosfjedgCHM/s640/blogger-image--1282959818.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Ek35gyWJ_To/WQ2JSIQq8OI/AAAAAAAALBQ/MlVt4ffk0Pk5ZaOy00Z6GGz20IosfjedgCHM/s640/blogger-image--1282959818.jpg"></a></div></div><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Fortunately I'm making progress now and my latest clinic this week was very encouraging. I'm back again in a months time, where they will reassess my lung function properly, as it too early days yet to do that until the inflammation clears more. It looks like I'm going to be needing some surgery in the near future too as a preventative measure to help my lungs. This is following test results after my lungs were found to be scarred after the acute rejection episodes I had back in autumn. But more on that later when I know more about it all myself. It's been a tough seven months with one thing or another and there's a few hurdles yet, but I do feel very positive that things are improving and are going to get better.</span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Onwards and upwards now and here's to more books...</span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-E581Ro27E94/WQ2JPMDFZRI/AAAAAAAALBM/zsDeQFvqSv4NXtvOIVgQXamLgFIp4_l3gCHM/s640/blogger-image--1867832765.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-E581Ro27E94/WQ2JPMDFZRI/AAAAAAAALBM/zsDeQFvqSv4NXtvOIVgQXamLgFIp4_l3gCHM/s640/blogger-image--1867832765.jpg"></a></div><br></div><br></span></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-35112334355675694632017-04-24T22:05:00.000+01:002017-04-24T22:22:14.317+01:00Heads TogetherThere has been much in the press this week about the campaign 'Heads Together' spearheaded by the royals, Prince William, his wife Kate and Prince Harry. The Princes have spoken out about the mental anguish of bereavement and Kate on the feelings and anxieties faced when becoming a brand new mum, using their own personal experiences. <div><br></div><div>There are many facets of mental health, thousands of different scenarios and concepts and many that we can relate to through our own experiences and feelings. There's been both praise and criticism about the royals speaking out, but without any doubt it's brought mental health into the spotlight and that can only be a good thing.<br>
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For me, as a patient who has been through the diagnosis of a terminal illness and survived it by eventually undergoing a life threatening heart and double lung transplant, mental and emotional well being is of paramount importance. It has been key to keeping myself physically strong and in optimum health over many years now and during the highs and lows of this transplant journey, which brings with it a whole new set of health challenges. </div>
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When you're first facing a difficult diagnosis and ongoing health problems, it can be extremely daunting and no-one can really tell you how to cope mentally and emotionally, as we're all different in how we cope anyway, and when there are life threatening issues at stake, then the focus by the medical staff is on keeping you alive and tackling the physical issues. Often your mind and your emotions are left playing 'catch up' later after all the physical stuff has been dealt with. Patients are often left to cope on their own with the mental and emotional side of things and it can have quite an impact on their progress to be left unsupported. </div>
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I count myself as being extremely lucky, as from the very outset of my illness, I had very solid emotional support from my close family and friends. Soon after diagnosis of Pulmonary Hypertension, I came across the PHAUK charity, which helped me find whole network of support and develop friendships with other PH sufferers. Those friendships meant I wasn't alone any more in what I was dealing with and going through. I also had support from my hospital and started going to the Papworth PH Matters Support Group, where again I made more friends and found a place where we could all help each other. </div>
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Then 'Transplant' stepped into my life and I already had friends from the PH community who were going through similar journeys, so I wasn't ever on my own. Between us, we supported each other and found some very supportive transplant groups, which in turn extended our network of support and developed even more meaningful friendships. I also found solace in things I've always enjoyed like reading, writing, travelling, wildlife, gardening, nature, photography, exploring the outdoors and volunteering. </div>
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One of the main reasons I started my blog and wrote my first book 'Life Is For The Living' was to help both order and express my emotions about those thoughts and feelings that beseige you when you face life changing events that you have little control over. I hoped it may help others who face similiar traumas in their life and show them that they aren't alone in what they go tnrough. I think it's so important to share our experiences so we can help each other. </div>
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Last year we brought Ted, our cocker spaniel puppy home. Ted was a very deliberate ploy to bring some routine and stability after all the upheaval of illness and transplant. He was something for me to look after, love and nurture after everyone had been looking after me; something brand new in my life that had nothing to do with the past life I'd been forced to put behind me, my previous illness or my transplant. Ted suddenly became an integral part of my emotional and mental wellbeing, especially as when he actually arrived home I was back in hospital struggling with my first serious post transplant crisis. My latest book is all about my first year with Ted after arriving back home from hospital. It's a story of learning to grow and love together - a story for dog and animal lovers, but also a story for those interested in the importance of emotional and mental wellbeing when facing physical and debiliating health difficulties. </div>
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Unfortunately, I haven't quite finished the first draft as I'd planned due to more recent health setbacks, but I'm well on my way and it won't be too long before that important first step is reached and then the serious business of editing and redrafting will begin. My writing spurs me on and I shall keep you posted how things are going. Watch this space! </div>
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All in all it's been a great week for raising awareness of the importance of sharing experiences for emotional and mental health. </div>
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<i><b><u>Feedback from Amazon readers on 'Life Is For The Living'</u></b></i></div>
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<span style="background-color: white; color: #111111; font-family: "amazon ember" , "arial" , sans-serif; font-size: 13px;"><i>'So moving, honest and inspirational. The reader lives the challenging journey of Kathryn's deterioration, diagnosis and dream coming true with the transplant. The impact on Kathryn personally, her career and her amazing family are frankly shared , as well as her husband Rob' s often humourous and ironic reflections about the situations they heroically face together. Kathryn's wonderful style and amazing tale engage the reader's heart and mind ...so be prepared not to put this book down!'</i></span></div>
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<span class="a-size-base review-text" data-hook="review-body" style="box-sizing: border-box; font-size: 13px !important; line-height: 19px !important;"><i>'An emotional read, I could not put it down. Like other readers, I laughed, I cried and felt all emotions in between. Most importantly I am determined to always look forward and live life to the full.'</i></span></div>
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<span class="a-size-base review-text" data-hook="review-body" style="box-sizing: border-box; font-size: 13px !important; line-height: 19px !important;"><br></span><span class="a-size-base review-text" data-hook="review-body" style="box-sizing: border-box; font-size: 13px !important; line-height: 19px !important;"> <a href="https://www.amazon.co.uk/Life-Living-Kathryn-Graham-ebook/dp/B01BOOCB6G/ref=sr_1_1?s=books&ie=UTF8&qid=1493067613&sr=1-1&keywords=life+is+for+the+living">Purchase Book - All Proceeds To Charity</a></span></div>
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</div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-76973356312011020592017-04-13T09:56:00.001+01:002017-04-24T20:48:36.711+01:00Small StepsIt's been a little while since my last blog and that's just because I've had a blip with my health again. I literally just picked up a cold to start with, but having very little immune system due to my transplant, unfortunately I wasn't able to fight it off. My transplanted lungs were already left quite fragile from the acute rejection episodes I'd experienced before Christmas, so infection took a hold in my lungs and I ended up being blue lighted to my local hospital.<div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-yvByGjI6OyQ/WO9Hypp9bPI/AAAAAAAAK_E/VnoHTJ_ktGo/s640/blogger-image--1795170064.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-yvByGjI6OyQ/WO9Hypp9bPI/AAAAAAAAK_E/VnoHTJ_ktGo/s640/blogger-image--1795170064.jpg"></a></div><br><div><br></div><div>Our NHS is constantly being criticised, but I have nothing but praise for the care I was given - I had the NHS at its best. I had an emergency home visit from the GP within less than an hour of phoning and was immediately ambulanced to the Lister Hospital in Stevenage. The GP, paramedics and the staff at the Lister couldn't do too much and it helped make me feel safe and secure. I was in quite a state physically, and mentally a bit more than worried about what was going on with my lungs. I already had a bronchoscopy and biopsy with my transplant team booked for the following week because my lung function had been dropping again and had never recovered back to where it had been since the rejections.</div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">By late afternoon I'd been transferred to Papworth and was diagnosed with a severe chest infection and started on IV antibiotic treatment. Further investigations showed I'd picked up a strain of influenza too, so I was moved into isolation and given extra treatment for that. I think it's demonstrated to me just how serious infection can be with transplanted lungs and being immunosuppressed or if you are vulnerable due to other health issues or your age. I've always known it and have gone out of my way to try and avoid infection, but there is nothing like actually experiencing it to bring it home what a life threatening experience just catching a simple infection can become. </span></div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-eJkP36Za_R8/WO9j_IjVDyI/AAAAAAAAK_U/ek20gmg9-Og/s640/blogger-image-1024464572.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-eJkP36Za_R8/WO9j_IjVDyI/AAAAAAAAK_U/ek20gmg9-Og/s640/blogger-image-1024464572.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">A few weeks in hospital and now home again, it's taking small steps and time to recover. I hadn't been able to do much for myself because of my poor breathing and lack of strength and Rob automatically went into 'carer' mode yet again. It's been difficult to measure progress on a daily basis as it's slow, but over a week we can see signs of improvement that are encouraging. I've actually managed to start eating more, which will help build me up a bit I hope. My Sats have improved, although my breathing is still a struggle. I think this is very encouraging and hopefully I will feel the difference soon. It seems to take me forever but I've been able to wash, dress and bathe independently in the last few days, which again, feels like a huge step forward. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-a3c5Y41flrE/WO9kGZiUu_I/AAAAAAAAK_c/VchyJ2EWQ4c/s640/blogger-image-1299741668.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-a3c5Y41flrE/WO9kGZiUu_I/AAAAAAAAK_c/VchyJ2EWQ4c/s640/blogger-image-1299741668.jpg"></a></div><br></span></div><div><br></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">My consultant did say this will take a few months to recover from, so it really is small steps, but I've done this before, probably many times now over this last seven years, so I am confident that if I keep on pushing myself, I will keep on progressing forwards. Hopefully things will be onwards and upwards from here. </font></div><div><br></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I'm looking forward to a quiet and relaxing Easter weekend with my family and </font><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">just want to say a massive thanks for all the messages of support, love and good wishes you have sent us. It really does make a difference when things feel like they're a struggle. Wishing you all a very happy and peaceful Easter weekend. Enjoy. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-20849983914166043842017-02-28T21:01:00.001+00:002017-03-04T14:43:30.255+00:00'Life is for the Living' - One Year On<div class="separator" style="clear: both;">
It's been a year now since my book 'Life For The Living' was first published. Writing and publishing a book was a dream come true for me and had been something I'd always wanted to do from being a small child. I think it all stemmed from my love of books and reading. As a child I would read and read and spend my pocket money on books. I've always been a bookworm I think. </div>
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There was nothing like that feeling when the first manuscript was completed. Then followed the final redraft and editing through to designing the book cover and finally pressing that 'publish' button on Amazon. Then the boxes of newly published books arrived and I held my own book in my hands for the first time - proof that you can make a dream come true. I was actually holding my dream in my hands! </div>
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It felt a little strange to physically download a copy of my own book on my Kindle and be able to read something that I'd written myself on there. These were big 'highs' after the hard work of writing. Writing the book through to publishing it had taken me 18 months or so, endless hours of writing and note making at all times of day and night when ideas popped in my head. I'd felt both relief and euphoria to have all those thoughts and feelings that had been swirling around in complete chaos in my head, all organised and packed into a memoir at long last. </div>
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Then came the book launch event, again a little surreal, but a fantastic opportunity to celebrate both the book and the wonderful gift of organ donation with friends and family. It was also my first chance to sell hard copies of my book and raise funds for causes very close to my heart. I'd decided beforehand that I would donate any proceeds from the book to Papworth Hospital Charity, the PHAUK, Papworth PH Support Group and Papworth Transplant Social and Support Group. </div>
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A group of us were in the middle of setting up the Papworth Transplant Social and Support Group and we managed to hold a raffle and receive a couple of big donations at the event to help us on our way. I hadn't really set out to fundraise, my main aim for the book had been to raise awareness of Organ Donation and Pulmonary Hypertension, but thanks to everyone's kind generosity this was a lovely surprise. </div>
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I was thrilled to have written the book, but even more delighted as the book began to sell and I was able to make donations to the various causes I had chosen. To date I've sold over a thousand books and sales are still ongoing. The book and raising awareness of Organ Donation and Pulmonary Hypertension will always be an ongoing project. </div>
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I was <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">lucky to be supported by Papworth Hospital and Rob and I attended several events where we were able to talk about the book and help raise awareness. My transplant team and especially my transplant surgeon also helped me to promote it - not only did he save my life but he was now helping me in my new life! Also, I've managed to accumulate over 30 plus reviews on Amazon, mostly 5 star, which has helped immensely, as Amazon promotes books for free depending on the amount of reviews. If you've read the book and are an Amazon customer and fancy writing a review, not only may it help with sales, but it may help with raising more awareness and funds. </span></div>
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The 'Chariots of Fire' event to raise funds for the DCD Heart Transplant Programme.<br />
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Raising awareness of Organ Donation and Transplant to John Henry Newman Sixth Form</div>
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Papworth Transplant Annual Patients' Event</div>
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John Henry Newman's Christmas Concert, Fundraiser and Book Event for Papworth Hospital Charity</div>
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All in all it's been a brilliant year for 'Life Is For The Living' and with profits from book sales and book events we've been able to raise over £7000 plus. The book profits to date have been shared between Papworth Hospital Charity, PHAUK, Papworth PH Matters Support Group and Papworth Transplant Social and Support Group. Book event proceeds have been donated to the Papworth Transplant Social and Support Group and Papworth Hospital Charity for the Balloon Pulmonary Angioplasty Project (Pulmonary Hypertension) and the DCD Heart Transplant Project (Transplant). </div>
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I would like to say a massive thanks to every single one of you who have purchased and read my book and have helped spread the word about it or supported any of the book events, which has enabled this to happen. </div>
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Here's to another successful year of raising more awareness! </div>
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<a href="https://www.amazon.co.uk/Life-Living-Kathryn-Graham/dp/1523412534/ref=sr_1_1?s=books&ie=UTF8&qid=1488637793&sr=1-1&keywords=life+is+for+the+living">Click here to purchase book</a></div>
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<br />Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com1tag:blogger.com,1999:blog-9135728785540920259.post-68529969849015271842017-02-17T18:56:00.001+00:002017-02-24T20:08:32.018+00:00Everything Looks Golden in the SunlightAs we walk along the pathways in the woods and along the fields I think and reflect over the last six months. It's a glorious and mild day today, the birds are singing louder and the days are a little longer now. The last few weeks have been quite dismal and wet and looking out to the horizon, everything looks warm and golden in the sunlight today.<div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-gHlqGwc4W3A/WKdyl_3jseI/AAAAAAAAK2Q/aU6UMvcmsnk/s640/blogger-image-1940955938.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-gHlqGwc4W3A/WKdyl_3jseI/AAAAAAAAK2Q/aU6UMvcmsnk/s640/blogger-image-1940955938.jpg"></a></div><br></div><div>I <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">remember walking these pathways with Rob and Ted, our dog, late last summer or was it early autumn? I can't quite recall properly, as so much has happened. One thing I do remember though, was that the weather was still warm and the sun was shining. We'd had a good summer and I'd said to Rob as we'd wandered around enjoying our walk and the countryside, 'Is it wrong to be looking forward to winter already? Those muddy walks; crisp fresh air; wellington boots; warm, woolly jumpers...' Rob was retiring and there seemed so much to look forward to. </span></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-nquyfNlCpGw/WKdycqwUkZI/AAAAAAAAK2E/to3z38c0yUI/s640/blogger-image-901728147.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-nquyfNlCpGw/WKdycqwUkZI/AAAAAAAAK2E/to3z38c0yUI/s640/blogger-image-901728147.jpg"></a></div><div><br></div><div>Then life threw one of its spanners in the plans as it does and we ended up back on a roller coaster again, as I battled with acute rejection in my lungs through the autumn and into December and we missed coming back here to the woods to do that winter walk and all the walking and exploring new places we'd planned to do. Autumn and the lead up to Christmas had been a difficult time, but luckily things improved with my health by Christmas - yet another crisis steadied. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-bMi2OuTwq5g/WKdygM4z1nI/AAAAAAAAK2I/iTAEI2MZxv8/s640/blogger-image--337065569.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-bMi2OuTwq5g/WKdygM4z1nI/AAAAAAAAK2I/iTAEI2MZxv8/s640/blogger-image--337065569.jpg"></a></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">January and things were feeling much brighter and we were getting back to some normality, expectantly waiting for Sarah to have her baby. She was two weeks overdue when the baby started to come and things didn't go quite to plan, as often happens with pregnancy. There were a few complications, a few sleepless nights and a few worries as the labour stretched on for days. Then all was well and ended well with the birth of our beautiful grandson Freddie. It was a huge relief. </div><div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cgHKX-S1nXo/WKdyi2eIKGI/AAAAAAAAK2M/m9HVDcRIP0E/s640/blogger-image--1403413039.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cgHKX-S1nXo/WKdyi2eIKGI/AAAAAAAAK2M/m9HVDcRIP0E/s640/blogger-image--1403413039.jpg"></a></div><br></div><div><div class="separator" style="clear: both;">We were back to some normality once more. It was fantastic to feel well enough to help out in those first few days when Sarah and the baby came home and I felt so grateful my 'rejection' had stabilised itself. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then the roller coaster set itself off once more. Sarah was rushed back into hospital with complications. We were thrust into the deep end of grandparenting and found ourselves late one night suddenly caring for a newborn baby while worrying about our daughter in hospital and what was going to happen next.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-kOShNh-LaGM/WKdzUxUPWKI/AAAAAAAAK2k/nPw710rDUyk/s640/blogger-image--1932081647.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-kOShNh-LaGM/WKdzUxUPWKI/AAAAAAAAK2k/nPw710rDUyk/s640/blogger-image--1932081647.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I'd begun to feel by the end of last year that I had little reserves left to pull on anymore; that I was losing the inner strength to keep on coping with all the issues that just my own health keeps on throwing at us. You can surprise yourself sometimes though and strength can suddenly come out of nowhere. We somehow rallied to the crisis. I suppose you just have to. Rob said, 'It's what we do best!' </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">After she was treated for a few days in hospital, Sarah and her family came home to us for a few days while she recovered and then felt fit enough to go home. A happy resolution with mum and baby both doing fine again.</div></div></div></div></div><div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-HGWj6Mr1OIM/WKd0gap68WI/AAAAAAAAK3E/qVpHqn2Oxl0/s640/blogger-image-1062469110.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-HGWj6Mr1OIM/WKd0gap68WI/AAAAAAAAK3E/qVpHqn2Oxl0/s640/blogger-image-1062469110.jpg"></a></div><br></div><div><div class="separator" style="clear: both;">So we're back off the rollercoaster, back on level ground again, feeling relieved and thankful and during February we have been settling back down to normality once more. Back to those plans of last September. Picking them all back up again. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">It's great to be back walking in the countryside once again, just quietly walking our dog, enjoying the mild weather and winter sunshine. Enjoying peace and tranquility and some normality. Making new plans, exploring new pathways again. </div></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-CdDL2Xv9qWQ/WKd0jE27trI/AAAAAAAAK3I/oKvnloWGGeM/s640/blogger-image-1151289487.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-CdDL2Xv9qWQ/WKd0jE27trI/AAAAAAAAK3I/oKvnloWGGeM/s640/blogger-image-1151289487.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are a little different than we were six months ago when we last took this walk. We've been starkly reminded again with the events of the last few months just how fragile health and life can be and how lucky we have been yet again. My lungs are a little different than before, they don't work as well unfortunately. We're still unsure yet whether they ever will. Only time will tell. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I have more tests planned and another MOT at clinic in a few weeks to see how things are. There is one thing for sure though, I'm determined that some breathlessness isn't going to stop us enjoying life again and making plans to do new things. I'm determined to keep on trying to get fitter to see if it can help my lungs improve. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are different than we were a few months ago too, because we are grandparents now. We have a beautiful baby to enjoy and spoil and I'm determined to stay well so I can enjoy him and watch him thrive and grow. I don't think I could have any better incentive. </div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Today everything looks golden in the sunlight. </div><div><div class="separator" style="clear: both;"><br></div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Rs4V4BhP6qU/WKd0Wn3Y3mI/AAAAAAAAK24/RbJ5ljQJvSc/s640/blogger-image--768621887.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Rs4V4BhP6qU/WKd0Wn3Y3mI/AAAAAAAAK24/RbJ5ljQJvSc/s640/blogger-image--768621887.jpg"></a></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-50315135346891716302017-02-10T11:54:00.001+00:002017-02-10T12:17:57.567+00:00The Gift of LifeI've been incredibly lucky to have received my life saving heart and lung transplant over three years ago and during those three years I've been able to see and do so many things. There have been big family milestones such as Rose's 21st, our Silver Wedding Anniversary and seeing Sarah and Oli get married. This autumn I saw both our girls graduate. <div><div><br></div><div>When I found out I was really sick before my transplant these were all future events that flashed through my mind . A myriad of pictures one after another whizzing in front of me; future dreams; dreams that I'd perhaps always taken for granted now slipping away in the face of illness. And then came the gift of my heart and lungs - the gift of new life for me and a gift that restored our family again. A gift that gave me back those dreams. </div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Now our family has been given another new gift of life, our brand new baby grandson, Freddie, born just a few weeks ago. My dreams back then didn't stretch as far as this - I hadn't dared hope I don't think or dared to even wish for so much. Now every achievement, dream and wish has been surpassed with the arrival of Freddie. I cannot thank my donor or their family enough for enabling me to see this moment and to hold my precious first grandchild in my arms. </span></div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jPd_KiuJ5y4/WJ2vMdmxg3I/AAAAAAAAK0Y/PV2WGOy9bdg/s640/blogger-image--1962203796.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jPd_KiuJ5y4/WJ2vMdmxg3I/AAAAAAAAK0Y/PV2WGOy9bdg/s640/blogger-image--1962203796.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-9k8AFiTWvbQ/WJ2vSkHnjCI/AAAAAAAAK0g/NUQzouTQGpU/s640/blogger-image--1753071881.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-9k8AFiTWvbQ/WJ2vSkHnjCI/AAAAAAAAK0g/NUQzouTQGpU/s640/blogger-image--1753071881.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-ac8jJ-GhMFI/WJ2vPt9x72I/AAAAAAAAK0c/8fsed0pzFh8/s640/blogger-image-797129760.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-ac8jJ-GhMFI/WJ2vPt9x72I/AAAAAAAAK0c/8fsed0pzFh8/s640/blogger-image-797129760.jpg"></a></div><br></div><br></div><br></div><br></span></div></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-22333365998774746192017-01-22T18:29:00.001+00:002017-01-25T15:20:33.462+00:00Celebrate BurnsWhich day on January's calendar <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">brings a mix of poetry, haggis, whisky and celebration? It has to be Burns' Night of course! </span><br />
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">We've had those few weeks of post Christmas blues, Christmas debts, broken New Year resolutions - or that's what we are brainwashed into believing if you read all the newspapers. Most of us are just getting back into the routine of things again and back to normal life after all the indulgence of Christmas. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Burns' Night is always a welcome celebration after those first few weeks of January and buckling back down to routine - one of the first celebrations on the calendar in the New Year. We always celebrate Burns' Night in our family. For us, it's a way of remembering Rob's family - his mother and father who were born in Scotland. A way to think of Rob's heritage and remember those who are now absent from our lives. When it's Burn's Night I always remember fondly Rob's dad reading Burn's Selkirk Grace before the meal at our wedding breakfast. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">The very first Burns' supper was held in 1801, when Burns' friends got together to mark the fifth anniversary of Burns' death. They celebrated his life with readings of his works, a haggis supper with tatties and neeps (that's potatoes and turnips) and a speech dedicated to the Bard (now known as the Immortal Memory). Despite a short life, Burns wrote many poems and songs, which have been enjoyed by generations. Many of us will have sung in the New Year recently with a rendition of 'Auld Lang Syne', probably Burns' most famous song. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">We always used to enjoy a Burns supper when Rob's parents were alive and we continue to keep up the family tradition every year now. We usually enjoy a supper of haggis, neeps and tatties and perhaps a wee dram of whisky. There will be lots of Burns Night celebrations being held all over the country tonight. Usually they start with the Selkirk Grace, then the haggis is piped in, with 'Burns' Address to a Haggis' being read to the audience, then a toast to the haggis. Recitals are performed after the meal including 'The Immortal Memory' and then toasts are made to the lasses. The evening finishes with the audience standing with crossed arms, joining hands and singing 'Auld Lang Syne'. It's all great fun! </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">Do you celebrate Burns' Night or your family's heritage? </span></div>
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Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-59722100560518190112017-01-19T15:06:00.001+00:002017-02-24T04:50:25.844+00:00Which Books Are You Reading?Which books are you reading?<div><br></div><div>I'm currently reading a fictional book 'Circling The Sun' by Paula McLain. This is actually a fictional and historical memoir based around the facts of the colourful life of Beryl Markham - the first woman to fly across the Atlantic solo. Much of the book focuses on her childhood and life in Kenya and takes the reader through living a tough childhood and life during the 1920s in a Kenyan valley. It takes us through Kenya's spectacular landscapes and gives a slice of living in colonnial Kenya with its isolation, partying and scandalous divorces. So far I'm loving what I've read up to now, her story is remarkable, but it's the setting that's captivating for me. The descriptions of Kenya takes me straight back to our honeymoon and while I'm reading it I'm constantly conjuring up memories of the African savannahs; the wild, dangerous and exotic animals; the red, dusty sands and tracks and the feeling of being thousands of miles away from anywhere... I love a book that can do this. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-AcE6bPiV3nA/WIDkXeOJVhI/AAAAAAAAKxU/pnNdry1Kkzw/s640/blogger-image-1121537571.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-AcE6bPiV3nA/WIDkXeOJVhI/AAAAAAAAKxU/pnNdry1Kkzw/s640/blogger-image-1121537571.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I've also a few non fiction books about dogs on the go - partly because I love dogs and I'm in the middle of writing another memoir about my first year with Ted and partly because we are still training Ted. India Knight's book 'The Goodness Of Dogs' has many good tips on training and is a fabulous read for any dog lover. As I read in a review of it somewhere, it is written as though you are sat down and having a chat with a dog loving friend. There's plenty of humour to enjoy, which gave me a chuckle and reminded me of Ted. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-XYrQv_1CWdQ/WIDkavoXzXI/AAAAAAAAKxY/1bpNbEs10cA/s640/blogger-image--1283348143.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-XYrQv_1CWdQ/WIDkavoXzXI/AAAAAAAAKxY/1bpNbEs10cA/s640/blogger-image--1283348143.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I'm also dipping in and out of 'Dog Songs' by Mary Oliver a Pulitzer Prize winner for her poetry. As the blurb on the cover describes, this is a collection of poems celebrating the special bond between humans and dogs and illustrates how dogs can 'open our eyes to lessons of the moment and the joys of nature and connection'. A thoughtful and endearing read and I can definitely relate her experiences with her dogs to my own dog Ted and dogs I've had in my life previously. </div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-KSYswB5vj10/WIDkeALfvDI/AAAAAAAAKxc/0osbwWfjn28/s640/blogger-image-759799411.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-KSYswB5vj10/WIDkeALfvDI/AAAAAAAAKxc/0osbwWfjn28/s640/blogger-image-759799411.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Rob was given 'Very British Problems' by Rob Temple for Christmas and I have to say I've been sneaking a quick read of it every now and again because I follow 'Very British Problems' on Twitter and the Tweets always bring a smile to my face. It sums up how we Brits are often socially awkward but very well meaning. A book to dip in and out of and give you a laugh when you need one. </div><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-9C3xr3Lmbqs/WIDkQHlHRbI/AAAAAAAAKxM/52whwufbh6Q/s640/blogger-image--1819941562.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-9C3xr3Lmbqs/WIDkQHlHRbI/AAAAAAAAKxM/52whwufbh6Q/s640/blogger-image--1819941562.jpg"></a></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;">Then I've <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">a couple of books on 'style' that I'm checking in and out of. One of them was a lovely surprise gift from a friend when I was unwell before Christmas. She knows I'm a bit of a scarf collector and was interested in this book aptly named 'How To Use A Scarf'. It was a lovely surprise to receive it and a great motivator when I felt unwell to get dressed up and try out a new scarf style. Just the ticket to feeling good. I'm still dipping in and out of it to try new ideas for my scarf collection. Maybe my scarf collection and the new ways to wear them could make another blog one day! </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I also treated myself to Anna Harvey's 'Timeless Style'. I love Vogue magazine and fashion, so I was interested to pick up a few good tips from an ex Vogue editor. I'm still have this book close by, popping in and out of it when I feel the urge. I find when I've been battling with ups and downs that to try and make an effort to look good can help. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">That's my reading for now and I've always a whole lot more stacking up and waiting for when I'm ready for a new read. Here's a few waiting and ready: </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-gsy9dtmS2oo/WIDkL3W6rGI/AAAAAAAAKxI/T3DEYP257-g/s640/blogger-image-2088906264.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-gsy9dtmS2oo/WIDkL3W6rGI/AAAAAAAAKxI/T3DEYP257-g/s640/blogger-image-2088906264.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-78EnDFiYz6o/WIDkThGWe4I/AAAAAAAAKxQ/nk8PWoKyGKU/s640/blogger-image-202605325.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-78EnDFiYz6o/WIDkThGWe4I/AAAAAAAAKxQ/nk8PWoKyGKU/s640/blogger-image-202605325.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-5aQPXONJHZQ/WIDnX1dDUhI/AAAAAAAAKxw/KqM8uFp7psI/s640/blogger-image--2018635716.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-5aQPXONJHZQ/WIDnX1dDUhI/AAAAAAAAKxw/KqM8uFp7psI/s640/blogger-image--2018635716.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jshEn-7BL0E/WIDnbt4MlVI/AAAAAAAAKx0/FKZfC-8O8v4/s640/blogger-image--1084924864.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jshEn-7BL0E/WIDnbt4MlVI/AAAAAAAAKx0/FKZfC-8O8v4/s640/blogger-image--1084924864.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-9WQmoMpwC4k/WIDoSUh4-hI/AAAAAAAAKyA/sTGA_6bMbBE/s640/blogger-image-1460273886.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-9WQmoMpwC4k/WIDoSUh4-hI/AAAAAAAAKyA/sTGA_6bMbBE/s640/blogger-image-1460273886.jpg"></a></div></div></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div>I better get a move on. Too many interesting books and that's just a few...</div><br></div><br></div><br></span></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-64475703431279224982017-01-12T20:48:00.000+00:002017-01-12T21:06:05.653+00:00JanuaryJanuary and arriving with it another brand new year and leaving a previous one behind. January 2017 rings familar with January 2016 for me. I started 2016 waking up and in my own bed and feeling much better after arriving home late on New Year's Eve following nearly a month in hospital and a few months of being unwell. Bring on January 2017 and although I'd not physically been in hospital for a month, I'd been in and out of hospital and made many trips there due to being seriously unwell yet again for those months ending the year. So both times starting a brand new year with fresh new hope and resolve to recover and regain my health once again. And starting the year with an even bigger appreciation and anticipation for life and what this new year may hold.<br>
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I'd begun to feel a lot better and brighter during those immediate few days before Christmas. I didn't dare to hope that it might last and I might feel well again. But it did and I'm much better now following those two awful bouts of acute rejection and all that comes with it. The heavy treatment, the harsh side effects and the mental and emotional anguish that comes with knowing that my body doesn't want accept my new lungs. The not knowing which way things may go. Will the treatment work? Will things deteriorate even more? In this world of transplant things can spiral out of control so quickly. It's not an exaggeration - it's happened to friends - we've lost friends unexpectedly and we have friends still, who are battling hard at this moment to overcome the fate that rejection can bring. Organ rejection is challenging in every way and is physically, mentally and emotionally gruelling. </div>
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So January 2017 brought respite and relief for me just in that I knew I'd turned a corner in this battle - that I felt better and stronger was a good sign and this week after a visit to clinic, the signs are still looking positive. The routine tests showed that I'm now stable, that I've overcome this setback for now, that I've beaten these rejection episodes. I'm still not totally through it. My lung function has declined by 25% now, but there's still a chance and hope it may improve now I'm stronger and able to exercise properly again. My medication has been altered yet again to help matters, increases in some, decreases in others to try and maintain the delicate balances needed to prevent infection and rejection flaring. I've been given a steroid inhaler too, to continue treating and preventing the airway rejection. There's still more clinics in the next weeks and months to check progress. I don't mind any of this, as I count myself lucky to have got this far - to have been able to hang on to some reasonable lung function and to feel well again. It's been the best Christmas present and best start to the new year I could have asked for. </div>
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My new year resolutions aren't big ones. Just going through all this has enabled me to re-evaluate things yet again. My priorities are to keep on working hard on my health, recovery and becoming stronger again. If I can keep my health, then I can work on my other resolutions. Rob had just retired when I fell ill, suddenly he became my carer again. Now in a new year we are starting off again with our retirement plans. More time together, more memories to make. We're expecting a new grandchild, so helping Sarah and Oli and spending even more time with family will be a big priority.</div>
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Then I hope to continue working with our Transplant Group at the hospital with our support group and the other initiatives we've been involved with. We set up the support group to help patients going through transplant and its ups and downs. It's strange as the tables were turned in those few months before Christmas and members of the support group gave me so much support, which helped me through the difficult parts. It was much appreciated and made me realise even more how vital it is to have a support network of people who understand properly and can share their own experiences to help each other. </div>
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I've also recently become an ambassador for Papworth Hospital Charity and plan to continue to promote my book 'Life is for the Living' to help raise awareness of PH and transplant and funds to help and support these causes. <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">My last big priority and challenge for this year, is to complete my next book. I've been working on it for a while, but have been stopped in my tracks over the last few months. So I've restarted the work on it now, purposefully aiming to complete my first draft.</span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">They are all goals that are closely related to my priorities, things that have been ongoing already, but with being poorly again made me realise they are things that will always be close to my heart. The things I find important that give me a good balance in life. Time for family and friends. Time for important causes that have affected my life and time for myself through my writing. </span></div>
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<span style="font-family: Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif;">Wishing everyone a very happy and healthy New Year. I hope you have lots to look forward to, new plans and memories to make and that you're still sticking to those New Year resolutions whatever they are. For those struggling with their health, I hope the new year brings hope, strength and the opportunity to feel better. </span></div>
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Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-51892285992037945872016-12-23T15:51:00.001+00:002016-12-24T16:33:59.841+00:00Christmas Tree<div class="separator" style="clear: both;"><div class="separator" style="clear: both;">I love Christmas and there's nothing more special than decorating the house in readiness for the big day. We usually do this in early December in our household, so we can enjoy all the build up to the festivities - the twinkly lights, cosy evenings by a warm fire, present shopping and present wrapping. Then there's that final manic food shop, followed by the lovely peaceful feeling on Christmas Eve when everything is done and ready and the festivities are about to begin. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Iv8Xal4Jtjs/WF6ZF_edaaI/AAAAAAAAKrM/zW6MaYaeb2U/s640/blogger-image-144272977.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Iv8Xal4Jtjs/WF6ZF_edaaI/AAAAAAAAKrM/zW6MaYaeb2U/s640/blogger-image-144272977.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">One of my favourite things is decorating the Christmas tree. Decorations, lights and baubles are brought down from the loft and as each and every bauble is unwrapped and hung on the tree a happy memory is triggered. That's why I love decorating the tree so much - every bauble represents a precious memory. Memories from long ago; memories from the year we've just enjoyed; memories throughout the years. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Here are a few of those special baubles and memories: </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-nWLQGq4poCU/WF1HuOmHzDI/AAAAAAAAKpQ/Fwegv5-YTjU/s640/blogger-image--1912640424.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-nWLQGq4poCU/WF1HuOmHzDI/AAAAAAAAKpQ/Fwegv5-YTjU/s640/blogger-image--1912640424.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Salt dough decorations made by Sarah and Rose during primary school. </div><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-3Iqqv5-m-pw/WF1HiygmhJI/AAAAAAAAKpM/6mOREaKtNeI/s640/blogger-image-1862180368.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-3Iqqv5-m-pw/WF1HiygmhJI/AAAAAAAAKpM/6mOREaKtNeI/s640/blogger-image-1862180368.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-1NJ-4ekkUmU/WF1H29mN99I/AAAAAAAAKpU/ogUuEtZvmxE/s640/blogger-image-244364528.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-1NJ-4ekkUmU/WF1H29mN99I/AAAAAAAAKpU/ogUuEtZvmxE/s640/blogger-image-244364528.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Christmas decorations given to me during my teaching years. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-uumjBZmKzBQ/WF1Hd3E0bRI/AAAAAAAAKpI/XYGLa8vAfPE/s640/blogger-image-747688761.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-uumjBZmKzBQ/WF1Hd3E0bRI/AAAAAAAAKpI/XYGLa8vAfPE/s640/blogger-image-747688761.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-DUi1sGfI3co/WF1JnAkpJeI/AAAAAAAAKpw/tuuDA6oDfkk/s640/blogger-image--584598568.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-DUi1sGfI3co/WF1JnAkpJeI/AAAAAAAAKpw/tuuDA6oDfkk/s640/blogger-image--584598568.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Decorations made by Sarah and Rose during their nursery years. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-b9JymzOtYN4/WF1JsAhsMyI/AAAAAAAAKp4/6cCMR7riYyw/s640/blogger-image-1690869974.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-b9JymzOtYN4/WF1JsAhsMyI/AAAAAAAAKp4/6cCMR7riYyw/s640/blogger-image-1690869974.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-e6VvlylrqgM/WF1JplLt3sI/AAAAAAAAKp0/gyD9XDs1E6w/s640/blogger-image--704158459.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-e6VvlylrqgM/WF1JplLt3sI/AAAAAAAAKp0/gyD9XDs1E6w/s640/blogger-image--704158459.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A special decoration I chose in memory of my donor, who has given me the chance of more Christmases to enjoy with my family. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-toCFwES9DDQ/WF1JujLJpeI/AAAAAAAAKp8/mjQ1261vAc4/s640/blogger-image--1382455006.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-toCFwES9DDQ/WF1JujLJpeI/AAAAAAAAKp8/mjQ1261vAc4/s640/blogger-image--1382455006.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A decoration Sarah gave me for the first Christmas after my life saving and changing transplant. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-DxCA5ZsgpUE/WF1JhLBiS2I/AAAAAAAAKpo/1Gy30LRSCcQ/s640/blogger-image--1149644133.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-DxCA5ZsgpUE/WF1JhLBiS2I/AAAAAAAAKpo/1Gy30LRSCcQ/s640/blogger-image--1149644133.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A few decorations from Amsterdam after my first flight abroad following my transplant - something I never thought I'd do ever again. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-mE50ktUUfc4/WF1Li_MhECI/AAAAAAAAKq0/pj-PCAAmkIw/s640/blogger-image-530357283.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-mE50ktUUfc4/WF1Li_MhECI/AAAAAAAAKq0/pj-PCAAmkIw/s640/blogger-image-530357283.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-6D6IpJx0MVI/WF1JkgWOfiI/AAAAAAAAKps/Lr0Q78byCkw/s640/blogger-image--451493225.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-6D6IpJx0MVI/WF1JkgWOfiI/AAAAAAAAKps/Lr0Q78byCkw/s640/blogger-image--451493225.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Some memories of Christmas in New York, my second wonderful Christmas after transplant. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-XoYKpJEn91I/WF1LYxLQ9UI/AAAAAAAAKqk/r6Q5lgDBTWE/s640/blogger-image--588745898.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-XoYKpJEn91I/WF1LYxLQ9UI/AAAAAAAAKqk/r6Q5lgDBTWE/s640/blogger-image--588745898.jpg"></a></div><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-gE1ZYLwRQKY/WF1LTqb8TzI/AAAAAAAAKqc/Sy3Wcd1mlYI/s640/blogger-image--1239394121.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-gE1ZYLwRQKY/WF1LTqb8TzI/AAAAAAAAKqc/Sy3Wcd1mlYI/s640/blogger-image--1239394121.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Some decorations bought at Papworth hospital, above, one that represents the new heart and lungs I received and below one purchased last year when I spent all December and Christmas in hospital there.</div> </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cGFgatY8O5M/WF1LbTd17cI/AAAAAAAAKqo/acyhLKZ2KCs/s640/blogger-image--354292540.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cGFgatY8O5M/WF1LbTd17cI/AAAAAAAAKqo/acyhLKZ2KCs/s640/blogger-image--354292540.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-kT5mKcvTzac/WF1LWC8pvlI/AAAAAAAAKqg/BGpovWlSl6o/s640/blogger-image--726610642.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-kT5mKcvTzac/WF1LWC8pvlI/AAAAAAAAKqg/BGpovWlSl6o/s640/blogger-image--726610642.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Precious memories of Venice and Prague - places we visited on a dream holiday for our twenty-fifth wedding anniversay last year when we enjoyed a stay in Rome, followed by a cruise to Venice and a trip of a lifetime on the Orient Express from Venice to Prague.</div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-yhRcLZVBZsA/WF1LOCkl9fI/AAAAAAAAKqU/MhlY2N9HvMM/s640/blogger-image-797201168.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-yhRcLZVBZsA/WF1LOCkl9fI/AAAAAAAAKqU/MhlY2N9HvMM/s640/blogger-image-797201168.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-rcFGoyi0EHY/WF1Ldhm-f1I/AAAAAAAAKqs/zo3u7eNBJ2E/s640/blogger-image-1795914241.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-rcFGoyi0EHY/WF1Ldhm-f1I/AAAAAAAAKqs/zo3u7eNBJ2E/s640/blogger-image-1795914241.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A bauble from Budapest, where we enjoyed a wonderful trip to celebrate Rob's retirement this year. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-u-4FvhsheFU/WF1LgAkS4VI/AAAAAAAAKqw/RtNIBi4km1I/s640/blogger-image--273871064.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-u-4FvhsheFU/WF1LgAkS4VI/AAAAAAAAKqw/RtNIBi4km1I/s640/blogger-image--273871064.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Those are just a few of those special memories that hang on our tree as we begin to celebrate another Christmas and another year we've been able to enjoy time with family and friends and special moments making new memories. We always remember those times with loved ones no longer here too and my donor and their family who have given me many of these special times to enjoy and yet another Christmas to celebrate. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I wish all my family, friends and readers a very happy and peaceful Christmas and the very best of wishes and health for the New Year. </div><div class="separator" style="clear: both;"><br></div></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Z2rZ_-Bsw7c/WF6YhQ--mlI/AAAAAAAAKrI/yJHTposTbAQ/s640/blogger-image-883987138.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Z2rZ_-Bsw7c/WF6YhQ--mlI/AAAAAAAAKrI/yJHTposTbAQ/s640/blogger-image-883987138.jpg"></a></div><br></div>Oops! And a very happy Christmas from Ted too - he's all ready for some fun with his new hair cut and groom! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-OarXtcmM6R4/WF1LQr9uj4I/AAAAAAAAKqY/p1z8fwFS7IE/s640/blogger-image-266945724.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-OarXtcmM6R4/WF1LQr9uj4I/AAAAAAAAKqY/p1z8fwFS7IE/s640/blogger-image-266945724.jpg"></a></div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-67800804670626546412016-12-17T14:12:00.000+00:002016-12-17T14:17:59.514+00:00Christmas Concert<div class="separator" style="clear: both;">
I'm thrilled that this week my book sales surpassed a thousand copies. It means that if each one of those books have been read, then there will be a thousand more people out there who may be more aware about Organ Donation and Pulmonary Hypertension. I'm also pleased as a writer that people are still buying both hard copies and the Kindle version and the book seems to keep on going from strength to strength. A <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">big plus is that it has helped raise funds for charities and support groups close to my heart too. </span></div>
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Over the past few years Rob and I have been visiting the girls' old secondary school - The John Henry Newman School in Stevenage - to speak to the sixth form about organ donation and help them understand more about the issues surrounding it. This year the headteacher had read my book in the summer and invited us to speak again and also offered to support Papworth Hospital Charity by holding a non uniform day and a collection and chance to sell books at their annual Christmas Concert. We were delighted and excited about this. </div>
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The events managed to raise a grand total of £3600, plus we managed to sell plenty of books raising another £275 to add to the total. Rob and Sarah attended the concert along with Charlotte from Papworth Hospital Charity and it was an amazing evening. People were so kind and generous and I would like to thank everyone involved in organising everything and supporting us. I <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">was very disappointed that I couldn't attend, but my health problems of the last few months are still ongoing.</span></div>
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I would also like to thank those of you who sent donations to Papworth Hospital Charity in lieu of Christmas cards. I've been really touched by your thoughtfulness and generosity. <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"> Rob was able to pass these on to the charity at the concert event and the £80 donations received brought our total fundraising for Papworth Hospital Charity this Christmas to £3995. This support has really given me a huge boost after what has been a very difficult few months and has meant December has been a big high to end the year on. </span></div>
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If you are looking for a Christmas present or that extra stocking filler then there's still plenty of time to purchase a copy of 'Life is for the Living' on Amazon or maybe you are settling down for the Christmas holidays and just fancy a good read to download. The Amazon link is below and remember all funds are for Transplant and PH charities and support groups. </div>
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<a href="https://www.amazon.co.uk/Life-Living-Kathryn-Graham-ebook/dp/B01BOOCB6G/ref=sr_1_1?s=books&ie=UTF8&qid=1481983544&sr=1-1&keywords=life+is+for+the+">Purchase Life is for the Living</a></div>
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A few comments re the book: </div>
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'Just finished your book, so touching. Your paragraphs on the 'letter' from your donor's family had me in tears...thank you for your wonderful words...' R </div>
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'It's a compelling read - the inside personal story not just of the medical issues, but of how you, Rob and the family felt about what was happening to you all. And you tell it beautifully. Inspiring is an overused adjective nowadays, especially in health matters. But yours is a truly inspiring book.' LM </div>
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A massive thank you to everyone who has supported 'Life is for the Living' this last year and helped both raise awareness and funds for important causes. </div>
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<br>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-68424327973066491412016-12-03T13:55:00.001+00:002016-12-07T18:10:05.075+00:00GrandmaYour outlook to life changes when you have had a life threatening illness and surgery and still live with fragile health. Family moments are hugely important to most people, but after events such as these, precious family moments suddenly become very intense, you strive towards them, enjoy every moment while they happen and value that you've reached yet another milestone and been able to make another precious memory. <div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-A9kY4HfOz-w/WEcY6GmYY0I/AAAAAAAAKk8/IL_E4TJr7e0/s640/blogger-image--889186347.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-A9kY4HfOz-w/WEcY6GmYY0I/AAAAAAAAKk8/IL_E4TJr7e0/s640/blogger-image--889186347.jpg"></a></div><div><br></div><div>Earlier on this year, Rob and I had the lovely news that we were to be grandparents in the new year. Sarah is expecting her first baby very soon in January. Who knows if the baby is early, it might even be a Christmas baby. If all goes to plan, this will be another massive milestone in our family life, another one of those moments that I will see all because of the kindness of my donor and their family. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-PqXwigQeWqQ/WEcY0G7M3XI/AAAAAAAAKk0/3cX5nbXf13s/s640/blogger-image-2045313388.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-PqXwigQeWqQ/WEcY0G7M3XI/AAAAAAAAKk0/3cX5nbXf13s/s640/blogger-image-2045313388.jpg"></a></div></div><div><br></div><div>I've already been able to see the scans of the baby and see and feel it kicking, again these are very precious and special moments for me and I value so much that I've been able to enjoy and experience them. Sarah held her 'Baby Shower' at weekend. It seems to be a popular thing to do these days and a good excuse for a get together with friends. We enjoyed a lovely afternoon tea, games and lots of chatter and fun. It was a real boost amongst the health issues of the last few months. It also had me thinking about being a grandma and about both my own grandmas and what they meant to me. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Pk77R2Q7650/WEcY82AqCwI/AAAAAAAAKlA/sQDUhpIy3wY/s640/blogger-image-1910835197.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Pk77R2Q7650/WEcY82AqCwI/AAAAAAAAKlA/sQDUhpIy3wY/s640/blogger-image-1910835197.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I remember as a young child visiting my father's mother on Saturdays - playing in the garden; running along to the nearby train track to watch the steam trains rush past and hoot - something very different from home; watching Doctor Who at tea time whilst hiding behind a cushion. I can remember her coming to stay with us and sharing a room with her as we hadn't enough space to give her her own room - endless chatter and excitement that grandma was sharing my room. Happy memories. </div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-2IfdlqF0r7k/WEcY2iOvsQI/AAAAAAAAKk4/JLa-gg37c2M/s640/blogger-image--2104047923.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-2IfdlqF0r7k/WEcY2iOvsQI/AAAAAAAAKk4/JLa-gg37c2M/s640/blogger-image--2104047923.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">My mum's mum spent a lot of time with us, as she lived nearby - just around the corner. I was very close to her and spent hours with her while I was growing up. She lived next to my primary school - she would come and wave at us at playtimes. I would go to her house for tea after school. I've memories of us going shopping together every Saturday - she always used to treat me and we'd go for lunch in a cafe near the local market. I used to go to her house for lunch every Sunday until I left home. We had many special moments. </div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-axFc4hIbUaY/WEcaGqSqudI/AAAAAAAAKlI/0y0YL_-iOuY/s640/blogger-image--750378166.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-axFc4hIbUaY/WEcaGqSqudI/AAAAAAAAKlI/0y0YL_-iOuY/s640/blogger-image--750378166.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And my thoughts on being a grandma? It's hard to imagine being a grandma, as it only seems a very short time ago that Sarah and Rose were only babies and growing up. I'm only just getting used to my own children being adults. Suddenly I'm going to be a grandma. As a young child, I used to think my grandmas were old. I think most children probably think grandmas and grandads are old. Now I realise my own grandmas were probably only my age when I was little and weren't that old at all. I don't really feel old. I smile to myself, knowing my own grandchildren will probably think I'm old! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I'm looking forward to the baby's arrival and helping out Sarah if she needs a hand. It's really is going to be a new and exciting phase in our lives, especially since Rob has retired. We hopefully will have the time to be active grandparents. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I'd like my grandchildren to have similar and precious moments that I had with my grandmas, give them the time and patience like both my grandmas gave me and make them feel special. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-REtgJPR-n5k/WEcaNZAIFEI/AAAAAAAAKlQ/Tp6cJ61j3hg/s640/blogger-image-1110787912.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-REtgJPR-n5k/WEcaNZAIFEI/AAAAAAAAKlQ/Tp6cJ61j3hg/s640/blogger-image-1110787912.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are trying to be organised in time for both Christmas and the baby coming. There's still weeks to go, yet it may be imminent too, as we are counting in weeks now, not months anymore. We just hope for a safe arrival and a healthy baby and mum. </div><br></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-4hiBgAO9BuI/WEcaQiNAL6I/AAAAAAAAKlU/VMsQhSB-EQ0/s640/blogger-image-544799667.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-4hiBgAO9BuI/WEcaQiNAL6I/AAAAAAAAKlU/VMsQhSB-EQ0/s640/blogger-image-544799667.jpg"></a></div><br></div></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-tx13TJB3JvA/WEcaKK78PzI/AAAAAAAAKlM/XjvrSHhBA_c/s640/blogger-image--172550946.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-tx13TJB3JvA/WEcaKK78PzI/AAAAAAAAKlM/XjvrSHhBA_c/s640/blogger-image--172550946.jpg"></a></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-15632257064000669912016-11-29T16:28:00.001+00:002016-12-06T20:40:21.328+00:00A Mixed Bag<div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I went back in hospital on Thursday so that my Transplant Team could run some tests to see the how my lungs are doing and if they are recovering from the acute rejection and other problems that I've been experiencing over this last couple of months. They had identified two episodes of acute rejection, each being a different type. Yes, I'm finding out this 'R' word is a complicated thing now I have it. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I just thought beforehand, that the most common types of rejection were 'acute' and 'chronic' alongside a few less common types. Over the last few weeks, I've since discovered that there are different types within these types and that this 'rejection' thing is all a very complicated affair. I am not going to try and explain it all, as I'm just about keeping up understanding what is happening myself and my tests were all about checking to see if the 'rejection' had been successfully treated. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-0jMm9zZLOSY/WD2s5wfo8TI/AAAAAAAAKj8/I2iSkA7su6Y/s640/blogger-image-1445651048.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-0jMm9zZLOSY/WD2s5wfo8TI/AAAAAAAAKj8/I2iSkA7su6Y/s640/blogger-image-1445651048.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Prior to last week's tests, I'd had x-rays and a CT scan. These had also shown pseudomas, which have been identified as 'organising pneumonia' and some scarring on my lungs, which the cause is unknown. Unfortunately, I've been told that when a 'rejection' episode happens, and this is found in 'cell' changes within the lungs, for some lung transplant patients, this can trigger the pseudoma cells to start inflaming and causing problems too. Often pseudomas can be present, but don't cause symptoms. That was an added problem for me too. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-EPm4EoCkxQQ/WD2tYagp9WI/AAAAAAAAKkI/YWeTVHYwclk/s640/blogger-image-1232565334.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-EPm4EoCkxQQ/WD2tYagp9WI/AAAAAAAAKkI/YWeTVHYwclk/s640/blogger-image-1232565334.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">After two rounds of treatment to try and control all this, I had my tests and the findings are very much a mixed bag. On a very positive note, the organising pneumonia has improved and looks better on my x-ray than it did; however my x-ray still isn't as clear as it was back in August. My lung function has stabilised for now, which is a huge positive; again, it isn't as high as it was back in August. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Unfortunately 'rejection' was still identified from the biopsies again, but as my lung function has held, my consultants are pleased that I've responded positively to the steroids up until now. On the whole, there are some very positive outcomes, but as the 'rejection' is still there, this needs to be addressed further, as does the scarring on my lungs. I'm going to have some further investigations to try and get to the bottom of things, so it's an ongoing thing for now. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">It was decided not to give me more methylpred treatment, but to increase another one of my immunosuppressants instead and keep a higher steroid dose, so fortunately I was allowed home. I was relieved about that at least, as it gives me chance to try and recuperate and recover and see how I'm doing for myself now. </div><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jgE67PZErzM/WD2tEQ4jBsI/AAAAAAAAKkA/yWTAlKwxnkM/s640/blogger-image--1037438384.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jgE67PZErzM/WD2tEQ4jBsI/AAAAAAAAKkA/yWTAlKwxnkM/s640/blogger-image--1037438384.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This has all felt a difficult couple of months and a lot of the time while on the heavy doses of medication and after some of the invasive procedures, I've felt unwell and not my usual self. There's also been a lot of very positive things going on at home, which have kept me motivated and given me good things to focus on, which have helped so much. I just want to thank everyone for their support to us all during this rough time - every single lovely message, card, email etc has really helped us through and still does. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-MV23sf0Q5l0/WD2uu7nkA_I/AAAAAAAAKkY/6wJn_DgylKM/s640/blogger-image-2071850817.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-MV23sf0Q5l0/WD2uu7nkA_I/AAAAAAAAKkY/6wJn_DgylKM/s640/blogger-image-2071850817.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">To finish on a very positive note, today has been a glorious day and I managed to take Ted on a lovely walk all around the park. It felt wonderful to be back outside and well enough to be having a walk again and I'm planning to try this again now every day and build my exercise tolerance back up to those longer walks and twice daily walks that I was used to doing. </div><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-M-Cos6H0xhw/WD2ujiu-nII/AAAAAAAAKkU/wuQ7FwB6SsI/s640/blogger-image--1378420615.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-M-Cos6H0xhw/WD2ujiu-nII/AAAAAAAAKkU/wuQ7FwB6SsI/s640/blogger-image--1378420615.jpg"></a></div><br></div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-63077268816322910962016-11-22T15:36:00.000+00:002016-12-06T20:39:04.806+00:00Let's Talk About Pulmonary Hypertension<div class="separator" style="clear: both;">
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November is Pulmonary Hypertension Awareness Month and this week it is Pulmonary Hypertension Awareness Week in the UK. Pulmonary Hypertension (PH) is a rare, progressive and incurable disease. It is a serious condition that causes high blood pressure in the pulmonary arteries, which can severely damage the heart and lungs. </div>
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Unfortunately not many people have heard of it, so if you suffer from it, the lack of awareness can add to all the stress of the diagnosis and the battles you have to cope with on a daily basis. When you suffer from a rare disease like Pulmonary Hypertension, it can feel very isolating, <span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">as people don't understand about the disease and you are often misunderstood. Only circa 7000 people are affected by PH in the UK and it can affect anyone regardless of age or ethnic background. It is more common in women than men. </span></div>
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Pulmonary Hypertension is a very general term to describe this disease, but it is a very complex disease and really is much more than just 'pulmonary' and 'hypertension'. Indeed, it does very much involve 'hypertension', which is high blood pressure and with Pulmonary Hypertension it is a diagnosis of high blood pressure in the blood vessels of the lungs. When I suffered from Pulmonary Hypertension I must admit I used to become quite exasperated with this tag of 'hypertension', as people continually told me all about their high blood pressure problems and the tablets they were on for it, which is a totally different problem. Simple and straightforward high blood pressure can be extremely dangerous, but it can also be safely controlled by a few tablets and lifestyle changes and isn't usually a fatal problem unless it's undetected. </div>
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Pulmonary Hypertension, however is high blood pressure in the lungs and although it can be treated to try and stabilise a patient, it cannot be cured and it becomes progressive, damaging the blood vessels in the lungs, causing severe breathing difficulties and the heart to overwork until it begins to fail and it can become fatal. Treatments can be harsh, with difficult side effects and can include: oral heart failure tablets such as diuretics; targeted oral treatments to stabilise the high pressure in the lungs; oxygen therapy; intravenous medications and major surgeries such as operations to remove blood clots from the lungs, lung transplantation and heart and lung transplantation. </div>
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PH patients suffer with a range of symptoms such as breathlessness, extreme fatigue, dizziness, fainting, swollen ankles and legs, plus the side effects of varying levels of medications. </div>
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Take a look at the PHAUK website to find out more about the causes, the symptoms and the treatment of PH, as they are explained well and in depth on here.</div>
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<a href="http://www.phauk.org/">PHAUK WEBSITE</a></div>
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Pulmonary Hypertension is no 'ordinary' high blood pressure, in fact when I suffered from it, my 'ordinary' blood pressure was perfectly normal. I looked perfectly normal and well a lot of the time too, as heart and lung failure isn't something that anyone can see. It's something that's happening inside you, only you know how fatigued and unwell you feel, people cannot see it. It makes it difficult for others to understand when they cannot see you are sick and it is a disease that is unheard of. That is why we need to continue raising awareness to help others to understand more about the complexities of this disease and the impact on a Pulmonary Hypertension sufferer's life. </div>
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My own PH journey was a difficult one, with many hospital admissions and emergencies, countless tests and monitoring; many complex medications including combinations of oral medications, inhalers and complicated intravenous medication; a two year wait for, and then undergoing a heart and double lung transplant. My transplant has given me such a better quality of life, but a transplant does entail a whole range of other medications and new medical problems to cope with. My transplant was because of PH and my transplant journey is very much a part of my PH journey. </div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">When people say, 'You haven't PH any more - why keep going on about PH?' It's because PH has been a big part of where and who I am now. It's in my past, but has shaped my future. It's because PH is so misunderstood. It's because so many of my friends still suffer with PH. It's because we still hope for a cure for PH. </span></div>
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Part of the reason I wrote my book 'Life is for the Living' was to help raise awareness of Pulmonary Hypertension - to try and show others what it is like to live with a rare disease and undergo the varied steps of treatment as the disease progresses and the impact it has on a sufferer's life. Any proceeds from my book are for the charities that helped me through my journey and continue to do so, including the PHAUK, the charity that gave me advice, support and put me in touch with other Pulmonary Hypertension sufferers at a very desperate time in my life. </div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"><a href="https://www.amazon.co.uk/Life-Living-Kathryn-Graham/dp/1523412534/ref=sr_1_1?ie=UTF8&qid=1479828000&sr=8-1&keywords=Life+Is+For+The+Living">PURCHASE 'LIFE IS FOR THE LIVING'</a></span></div>
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I will always campaign to raise awareness of Pulmonary Hypertension, because once<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"> I didn't know </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">anything about it. It didn't really matter to me back in those days. Why take the time to learn a little about any rare disease?</span><span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"> Well it may just save a life - your own or someone else's or help you to understand what someone else is dealing with and going through. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;">I didn't know anything about PH and its symptoms once. Early diagnosis equals better prognosis. If only I had. </span></div>
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<span style="font-family: "helvetica neue light" , , "helvetica" , "arial" , sans-serif;"><a href="http://www.phaware365.org/">JOIN THE PHAWARE GLOBAL ASSOCIATION</a></span></div>
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Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-2817966695936788142016-11-11T19:18:00.001+00:002016-11-13T18:38:47.350+00:00Happy Times<div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-2lGdYljSVB8/WCcS3-NknPI/AAAAAAAAKfo/D5b2HaCskE0/s640/blogger-image-57462509.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-2lGdYljSVB8/WCcS3-NknPI/AAAAAAAAKfo/D5b2HaCskE0/s640/blogger-image-57462509.jpg"></a></div><br></div><div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div>Coming out of hospital and <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">home is always a big step - it's a step in trying to recover, complete the drug regime and hope it works its magic. It's a chance to take stock - be away from the hospital and amongst ordinary routines to try and work out what you can still manage, so you can </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">gauge where you are up to. An opportunity to challenge yourself a little, but keeping a balance of what's sensible for your health too. Most of all it's time to try and grab some special times with family and friends and enjoy some better moments in the middle of all the chaos. And this last few days has been all about that for me and my family - simply finding my feet again, catching myself up, accomplishing small daily challenges and trying to enjoy all there is to enjoy. </span></div></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-oE9IGFJ1EEg/WCcSe7adzyI/AAAAAAAAKfk/yAISIoTGmrM/s640/blogger-image--468181652.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-oE9IGFJ1EEg/WCcSe7adzyI/AAAAAAAAKfk/yAISIoTGmrM/s640/blogger-image--468181652.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">There's been plenty to squeeze in and enjoy in between hospital visits over this last few weeks. Somehow or another all the hospital stays have managed to fall in between exciting events that are so important to us as a family. That's given me good opportunities to focus on positive things that are happening in our lives. Firstly, there was Sarah's graduation ceremony and I was so pleased to have managed that. The thought of being able to see my girls graduate was one of the things that kept me driven through all my long illness and transplant recovery. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-d4a2A_E3Q6A/WCcNzmVWT4I/AAAAAAAAKfI/dzvNoJux9eY/s640/blogger-image-1879146286.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-d4a2A_E3Q6A/WCcNzmVWT4I/AAAAAAAAKfI/dzvNoJux9eY/s640/blogger-image-1879146286.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">This week we had Rose's graduation to attend and celebrate. This I knew would be a real challenge as I'd only just come out of hospital after being treated for yet another bout of rejection, that coming straight after increased treatment for the first round of rejection and organised pneumonia has left me feeling very weak, shaky and exhausted. We started drawing up a plan A, plan B and plan C on how I might manage to still be part of it, as I was determined to still celebrate and enjoy this special time for us. It was going to be trickier compared to Sarah's graduation, as it was being held in Bournemouth, would be a bigger event and would involve travelling. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-F--a6jBt6CU/WCcN5g8W7hI/AAAAAAAAKfQ/sIdsDLLiLq8/s640/blogger-image-323132425.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-F--a6jBt6CU/WCcN5g8W7hI/AAAAAAAAKfQ/sIdsDLLiLq8/s640/blogger-image-323132425.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-pjsg7ldbvAA/WCcNt1uOlfI/AAAAAAAAKfA/mr_iQqZ4rjM/s640/blogger-image-127797503.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-pjsg7ldbvAA/WCcNt1uOlfI/AAAAAAAAKfA/mr_iQqZ4rjM/s640/blogger-image-127797503.jpg"></a></div><br></div></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">In the end, we came up with a compromise to enable me to cope, but still be a part of Rose's special day. We decided that the actual ceremony would be too much to deal with. Firstly, there would be a lot of waiting around beforehand, followed by a few hours formalities, then photos and drinks receptions etc, which would be too much for me with how I am at the moment. Secondly, I'm so heavily immunosuppressed because of the rejection and there was going to be massive crowds of people, which isn't such a safe situation for me at the moment. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The ceremony was an afternoon one too, so it meant I'd have to manage the whole day plus eating out afterwards somehow. To try and do it all would have been too difficult. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-iugWVfeAuxo/WCcNw_rbN7I/AAAAAAAAKfE/_x6xzndsCg4/s640/blogger-image--919214289.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-iugWVfeAuxo/WCcNw_rbN7I/AAAAAAAAKfE/_x6xzndsCg4/s640/blogger-image--919214289.jpg"></a></div><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">So we decided to cut out the middle bit for me; sometimes it's a needs must and making a few sensible adjustments means you can still enjoy everything and be part of it and not miss out on everything. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">We had a good journey down and had a lazy evening with TV and pizza in the apartment we'd rented - home from home and lovely family time. In the morning, Rob and Rose went off to the university to pick up Rose's gown. Then everyone got dressed up and ready and I was able to see her all gowned up and we went down to the gardens on the seafront to take some family pictures. Everyone then went off to the ceremony and this gave me a few hours to rest up and take my time to get ready to go out for the meal we'd planned for evening. All afternoon long, the family sent me photos and videos as each part of the event took place, so I could see everything going on and not miss out on the fun. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-WXnwbhtAN7I/WCcNq_CHzaI/AAAAAAAAKe8/6QvStLoh8fk/s640/blogger-image--690217748.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-WXnwbhtAN7I/WCcNq_CHzaI/AAAAAAAAKe8/6QvStLoh8fk/s640/blogger-image--690217748.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-NVCTegOL4pc/WCcN2hkOb7I/AAAAAAAAKfM/zR_W73gI46M/s640/blogger-image--1922163854.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-NVCTegOL4pc/WCcN2hkOb7I/AAAAAAAAKfM/zR_W73gI46M/s640/blogger-image--1922163854.jpg"></a></div></div><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">In the evening we went out for a few hours for a lovely meal together and I had a wonderful time celebrating with everyone and it felt fantastic to be well enough to go and be out and about a little at last. It all felt a little surreal and very special to be sat eating in a lovely restaurant with my family, when only a few days earlier I'd been ticking off my breakfast, lunch and dinner charts back in hospital! </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-2aZXubzjmxc/WCcS9xwtdtI/AAAAAAAAKfs/DQyhw9zREtY/s640/blogger-image-1022293214.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-2aZXubzjmxc/WCcS9xwtdtI/AAAAAAAAKfs/DQyhw9zREtY/s640/blogger-image-1022293214.jpg"></a></div><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-8uqIvMSuF_0/WCcSIsMIqFI/AAAAAAAAKfc/WWYVlBv0u3k/s640/blogger-image-1087659533.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-8uqIvMSuF_0/WCcSIsMIqFI/AAAAAAAAKfc/WWYVlBv0u3k/s640/blogger-image-1087659533.jpg"></a></div><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-WrS8crRQcA8/WCcSTkW7_lI/AAAAAAAAKfg/3V5TF-aiiLA/s640/blogger-image--1346908910.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-WrS8crRQcA8/WCcSTkW7_lI/AAAAAAAAKfg/3V5TF-aiiLA/s640/blogger-image--1346908910.jpg"></a></div><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">The following morning we travelled back home a day earlier than planned, so I could have more chance to rest up before another lovely event with friends - Bernice's wedding to Scott. Bernice had a lung transplant three years ago and we became friends while we waited for our transplant calls. We had shared our journeys together and with other friends who were going through similar at the time. We've all remained good friends and Bernice's wedding was always going to be such a special event after all she has overcome and it's all thanks to our donors that we can celebrate such a wonderful milestone in Bernice's life together. </font></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Q3uTilLahJA/WCizMzils7I/AAAAAAAAKgA/uRfBNe1RhLw/s640/blogger-image--1660278478.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Q3uTilLahJA/WCizMzils7I/AAAAAAAAKgA/uRfBNe1RhLw/s640/blogger-image--1660278478.jpg"></a></div><br></div><div><br></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">All in all it's been a very special and uplifting week. Happy times! </font></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-8107993254853166572016-11-05T09:53:00.001+00:002016-11-06T22:12:38.621+00:00The 'R' WordThe 'R' word reared a few weeks ago now, when I was diagnosed as being in 'acute rejection' and just to complicate matters another diagnosis, that I had pseudomas colonising in both my lungs. It's believed that this has probably led from all the complications that followed the bout of CMV virus I had last Xmas. <div><br></div><div>Last Xmas seems a long time ago now, well it's nearly a year this month that the CMV reared itself. The problem with a transplant patient is that with an infection or virus then a careful balance needs to be struck with the immunosupressant medication. If you are too over immunosuppressed then it's difficult to control the infection; if you become under immunosuppressed then there is the strong possibility that your body may reject the transplanted organs. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cYDngvo1Kws/WB9NQ6xUP9I/AAAAAAAAKcM/-y2snC_40qg/s640/blogger-image-1783709330.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cYDngvo1Kws/WB9NQ6xUP9I/AAAAAAAAKcM/-y2snC_40qg/s640/blogger-image-1783709330.jpg"></a></div><br></div><div><br></div><div>When I had the CMV it was very severe, so my immunosuppression needed lowering to help combat it. After my CMV levels were back under control, it has since been a very delicate balance of controlling it so it would not reactivate and keeping the immunosuppression at the right level too in order to prevent rejection. I'd been having regular clinics and blood tests every month since, to keep a close eye on things, so I was lucky I happened to be at clinic and the rejection was found promptly. I shouldn't have been that shocked really that a rejection had happened, as that's one of the reasons they'd been monitoring me so closely. I thought I'd got away with it being nearly a year on from the infection.</div><div><br></div><div>The rejection was treated with high doses of IV methylpred steroids for three days and then with further oral steroids at reducing doses until I reached a suitable maintainance dose. To give you an idea of the increase I used to be on 5mg a day and the methylpred dose was 600mg. I also had to have another immunosuppression tablet doubled in dose. Pseudomas are a common thing in both pre and post lung transplant patients and can be without symptoms but when an infection or rejection episode occurs they can begin to colonise, start to inflame and even become infectious as they react, which is what had happened in my case and it was named as organising pneumonia. So I needed to be treated with a strong course of antibiotics too. And with all this happening, there was a fear of the CMV virus occurring again, so I had to be put back on the treatment for CMV too. All in all, a bit of a drug overload which in turn give their side effects on top of whatever else is happening, so some extra treatments for those too. Then it was a case of waiting a couple of weeks to see if the medication helped and whether the problems had been sorted, so add in a little anxiety on top and a lot of hope that this could all be turned around. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-6vlEpuLHRRk/WB9NUWhDI3I/AAAAAAAAKcQ/BpcAGJp18Qo/s640/blogger-image--782077501.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-6vlEpuLHRRk/WB9NUWhDI3I/AAAAAAAAKcQ/BpcAGJp18Qo/s640/blogger-image--782077501.jpg"></a></div><br></div><div><br></div><div>I arrived back at clinic and had all the routine tests done and my X-rays looked like the organised pneumonia was improving, which was a big positive. However, there was no improvement in my lung function, which the consultants had expected looking at the x-ray. There was even a slight decline, so they acted swiftly again and squeezed in an emergency CT scan before going ahead with another bronchoscopy and biopsy. I was admitted back in hospital again and unfortunately the biopsy came back with the disappointing result that another type of 'rejection' was now occuring. This time a rarer thing with an acute rejection, which the consultant described to me as cells localising in a stream of rejection in the airways of my lungs. So it was back to square one again - back with the routine steroids treatment again, although I've just had it and been through all that. It was another three days of the high dose methylpredisolone in hospital to zap this second rejection and home again now on high oral doses to keep up the treatment. They will reduce down a little over the next few days, but they are going to be maintained at a higher level to help my lungs recover if possible or hopefully at least help them remain where they are at. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-_EWPFSYexm0/WB9NNpDkfhI/AAAAAAAAKcI/MGKqIcLZ76k/s640/blogger-image-1576063177.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-_EWPFSYexm0/WB9NNpDkfhI/AAAAAAAAKcI/MGKqIcLZ76k/s640/blogger-image-1576063177.jpg"></a></div><br></div><div><br></div><div>It's a matter of waiting to see if this does the trick. There will be more biopsy results to come yet on the organised pneumonia front and discussion on the CT results amongst the team and I'm back at clinic in less than two weeks for another MOT, biopsy and bronchoscopy to see where we are at. I'm truly hoping and positive we can either turn this around at this point or hold things where they are at least. I'm also trying to be ready and prepared for whatever else may happen. </div><div><br></div><div>In the meantime we have lots of very positive things happening too and this keeps me motivated to grab life and every moment it offers. It is Rose's graduation ceremony on Thursday. We are working on a plan A, plan B and plan C on enabling me to either attend or at least be part of it all somehow. It will depend on how well I am, but we will find a way or a compromise that will work and it's something to really look forward to. </div><div><br></div><div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-BokxxqMIuSo/WB9gQvulXRI/AAAAAAAAKco/wUjuuQpNCaw/s640/blogger-image-878022282.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-BokxxqMIuSo/WB9gQvulXRI/AAAAAAAAKco/wUjuuQpNCaw/s640/blogger-image-878022282.jpg"></a></div></div><div><br></div><div><br></div><div>Rob also attended the Papworth Annual Patients' Event while I was in hospital and did a talk about what it's like to be a carer. Carers are often overlooked and they play such a vital role in all that we go through. I think it was a moving speech from what I've heard and I'm proud of him. He also did what was supposed to be my speech about our Transplant Patients' Representative Group that I chair and about the Transplant Support Group that our group have set up and got underway this year at Papworth. I was also supposed to be signing and selling my books there in aid of the support group and he successfully managed to sell quite a good few books for us too. It helped after the Director of Transplant Services and my transplant surgeon gave my book a big plug in his video. He's a person I'm forever grateful to for saving my life, but he continually supports us patients through our journeys, together with his marvellous team. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-YPVkj_3ZtJY/WB9NaWYtdAI/AAAAAAAAKcY/DjiDIwdsLhQ/s640/blogger-image-1951278037.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-YPVkj_3ZtJY/WB9NaWYtdAI/AAAAAAAAKcY/DjiDIwdsLhQ/s640/blogger-image-1951278037.jpg"></a></div><br></div><div><br></div><div>After all that, Rob was back by my bedside just in time for my biopsy results. All in all, he's been a star and a rock not only supporting me, but ensuring all the comittments I'd taken on were organised and worked smoothly without me. I can't thank him enough, but I know the causes are as dear to him as they are to me. </div><div><br></div><div>We've more activities planned with the John Henry Newman School in Stevenage and hope that these can still go ahead, as we hope to raise funds for the Papworth Hospital Charity, who are being very supportive and helping us with this. I'm looking forward to the Christmas concert there in December, where we will also be signing and selling books and giving talks with Papworth Hospital Charity about their work and raising awareness about Pulmonary Hypertension and organ donation through my book. The Papworth Hospital Charity are also supporting 'Life is for the Living' on their new and updated website, which is great news for us to help raise awareness and funds. </div><div><br></div><div>There is also our Christmas Transplant Support Group meeting on the 26th November, which is all organised with books on sale there again. If you are a Papworth patient, please let me know if you'd like to come. The Papworth Ely Cathedral carol service is on December 17th, where the charity will have a stall with 'Life is for the Living' on sale too. The Papworth PH group have their Christmas party on Saturday, 12th November. I can't make this one as it clashes with returning from Rose's graduation, but they will have my book on sale there too, helping to raise much needed funds for their very special group. </div><div><br></div><div>If you're going to any of these lovely events and fancy buying a copy of the book or picking up a copy or two for a Christmas pressie then there's your chance and you will be helping us to raise more awareness and funds for fantastic causes. Thanks to everyone who has already purchased it, we are hoping to pass selling a thousand copies by Christmas! </div><div><br></div><div>It's also November and a busy month for promoting awareness of PH - watch out for another blog post soon about all this coming up next... there's a lot happening! </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-o8qgVKWXolE/WB9NXIrp_2I/AAAAAAAAKcU/xC5_71NAu2I/s640/blogger-image--873697985.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-o8qgVKWXolE/WB9NXIrp_2I/AAAAAAAAKcU/xC5_71NAu2I/s640/blogger-image--873697985.jpg"></a></div><br></div><div><br></div><div>We also have our lovely friends, Bernice and Scott's wedding evening reception next weekend. Now this is a truly special wedding, as like myself, Bernice received her gift of new life and transplant three years ago. We shared our journeys together and she's gone on to have the most wonderful new life and is living her dreams. Her journey has been an amazing one to watch and it's all thanks to our donors and their families that we can celebrate these special moments. I'm so looking forward to it and meeting up with everyone.</div><div><br></div><div>And then there is Sarah's Baby Shower party and Christmas... so there isn't really much time for dwelling on 'what ifs', just so much to enjoy and be busy with and for living in the moment. The rest will unfold and slot in with whatever we are doing. We will just have to squeeze it in and whatever happens will fit in with us somehow. </div><div><br></div><div>Thanks for reading if you made it this far and haven't fallen asleep, I know it was a long one with so much happening! </div><div><br></div><div><br></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0tag:blogger.com,1999:blog-9135728785540920259.post-65432055739597425522016-11-02T17:35:00.001+00:002016-11-02T17:57:32.150+00:00A Positive DayIt's been a really good day today as I felt well enough to visit the John Henry Newman School in Stevenage, where Rob and I gave a talk to the sixth form on organ donation, transplant, my book 'Life is for the Living' and the important work of Papworth Hospital and Papworth Hospital Charity. <div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-xinrhwB4dsM/WBonPxXLd3I/AAAAAAAAKbQ/WoLpxupnVbk/s640/blogger-image-1040489844.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-xinrhwB4dsM/WBonPxXLd3I/AAAAAAAAKbQ/WoLpxupnVbk/s640/blogger-image-1040489844.jpg"></a></div><div><br></div><div>The school has chosen to support us in raising awareness of Pulmonary Hypertension and organ donation and help us raise funds for Papworth Hospital Charity during this autum. They are holding several events over the next few months, including a non-school uniform day, a book signing evening and a Christmas concert, which is fantastic. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-CIQMa7DcMKg/WBonSwDdjFI/AAAAAAAAKbU/rwPfn7dgIQQ/s640/blogger-image-1513310725.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-CIQMa7DcMKg/WBonSwDdjFI/AAAAAAAAKbU/rwPfn7dgIQQ/s640/blogger-image-1513310725.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-PU0of8gJghY/WBonMuNHiNI/AAAAAAAAKbM/ouLjEunkMlI/s640/blogger-image--1117607349.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-PU0of8gJghY/WBonMuNHiNI/AAAAAAAAKbM/ouLjEunkMlI/s640/blogger-image--1117607349.jpg"></a></div><br></div><div>It's quite poignant that our first event today was at the beginning of November as November is the month when the campaign for raising awareness of Pulmonary Hypertension is launched - the rare and incurable disease I had that led me to having a heart and double lung transplant. Pulmonary Hypertension is high blood pressure in the blood vessels in the lungs, eventually causing damage to both the lungs and the heart. There can be different causes such as congenital heart disease, autoimmune disorders and, as in my particular case, it can suddenly just start for no apparent reason and is then known as Pulmonary Arterial Hypertension. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-fQY9D-fp9HI/WBopCnU7goI/AAAAAAAAKbc/lQ0tT4DC9gI/s640/blogger-image-395422671.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-fQY9D-fp9HI/WBopCnU7goI/AAAAAAAAKbc/lQ0tT4DC9gI/s640/blogger-image-395422671.jpg"></a></div><br></div><div><br></div><div>Having been under the weather and still waiting on more tests, today had been another day that I'd been looking forward to and hoping I could still manage - one of those motivators to try and do something positive in between a time of what feels some uncertainty yet. It was a wonderful opportunity to speak to an audience of circa two hundred people about these important issues that are so close to our hearts. There was lots of interest, lots of leaflets given out and lots of discussion amongst the sixth form on organ donation. Our main message on organ donation was the importance of having that discussion with your family, so everyone knows what your wishes are. </div><div><br></div><div>All in all a very positive day for us and the start of more activities and exciting things to look forward to in these next months leading up to Christmas. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-AVZjIHHSXiY/WBonJhBme9I/AAAAAAAAKbI/whnVYFFL8t0/s640/blogger-image--388297074.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-AVZjIHHSXiY/WBonJhBme9I/AAAAAAAAKbI/whnVYFFL8t0/s640/blogger-image--388297074.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-6zElqX00EZw/WBonC_Qh9cI/AAAAAAAAKbA/qZ11M4Dr5dk/s640/blogger-image-1590233310.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-6zElqX00EZw/WBonC_Qh9cI/AAAAAAAAKbA/qZ11M4Dr5dk/s640/blogger-image-1590233310.jpg"></a></div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-op1ut8FC9gc/WBonGTmlAxI/AAAAAAAAKbE/PQc1voN67oE/s640/blogger-image--1607272570.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-op1ut8FC9gc/WBonGTmlAxI/AAAAAAAAKbE/PQc1voN67oE/s640/blogger-image--1607272570.jpg"></a></div><br></div><div><br></div><div><br></div><div><br></div></div>Kathrynhttp://www.blogger.com/profile/18314204660820473571noreply@blogger.com0