Between a Rock and a Hard Place

'Waiting has never been our choice in the past, nor is it in the present. We are always striving, anticipating the future and preparing for it'  

Flowers amidst the bleakness

I realise that as we go on each day, week and month and years even now, my illness has become 'normal' for me, what was once my normal world of busy wife, mum and teacher has been completely lost now and has somehow slowly slipped away and the reality of being ill and all that goes with it has become normality. Waiting in for drugs, collecting drugs from the pharmacy, visiting the GP, hospital stays, visiting the warfarin clinic, visiting the PH clinic, visiting the transplant clinic, blood tests, walk tests, lung function tests, CT scans, X-rays, echo- cardiograms and ECGs and managing the actual physical symptoms of being ill, which are many, plus all the various medication and intravenous drugs are all the norm for me now, where once upon a time even a visit to the GP would have been unheard of. In fact when we moved to our house seven years ago, I didn't even move GP surgeries for about the first three years! Now it's all normal to me and in the course of our everyday lives, sometimes it feels like I've carved out a career in being ill, which is not how I want to be or be defined, but it is difficult to stop it completely taking over and getting buried underneath the towering heap of it all. It takes a tremendous lot of effort and hard work sometimes to breathe normal life back in amongst it all, but we all keep trying our best and keep striving towards the future and trying to be prepared for my transplant when it comes.

This week has been a difficult one, on Wednesday I went back to Papworth for my three monthly visit to the Pulmonary Hypertension team, this time a full MOT on the day ward. I've done this before and knew what to expect; a deluge of more tests to go through: blood tests, walk test, lung function tests, x- ray, echo-cardiogram, ECG, MRSA tests, Hickman Line and pump checks, plus a thorough checking out by a doctor or consultant. So we prepared ourselves for a very long day.

I don't mind most of the tests now, as I've said, they are all a normal occurrence to me now, but for some reason I absolutely hate and detest the Lung Function Tests. I don't know why really, as they are not painful or anything, but there is just something so humiliating about sitting with a peg on your nose and some technician ordering you to blow this way and that way into a tube, then making you keep repeating it over and over again until they think you have done your best.

'We have to make history and approach the future with steady steps, not wait for the future to come to us'

A whole year ahead of us!

Following all the tests I had a thorough checking over by the consultant. It was at this point, when all seemed to be going well, but then after some discussion about the tests and about my quality of life that she broached the idea of having my intravenous drug increased. She thought my quality of life could be improved by having a higher dose of my intravenous drug and also that by doing this it would be preventative measure against further deterioration while I wait for my future transplant. I also had some signs of deterioration before Christmas and it is two years since it was last increased.  She thinks I need to be able to enjoy a better of quality of life now, not keep putting up with so many restrictions while I wait for the transplant that always just seems to loom in the future and be just outside of my grasp.

Now having the Epopostrenol increased may not usually be too big of a deal for most patients. It involves being admitted into hospital for a few days, the nursing staff will then either increase the flow rate of the pump gradually over a few days or slowly increase the amount of drug in the syringe on the pump, whilst you are wired up to and monitored on a heart tracing machine. All should be sorted within a few days and then you are allowed home if all is well. Some people get some mild side effects: headache, nausea, jaw pain and flushing are the usual ones, but then that normally will subside and you go home and feel much better.

For me it is a different story, unfortunately I have had a worse reaction to Epopostrenol than most patients usually do.  The first encounter, actually, being put on the drug resulted in three weeks of being sick, diarrhoea, searing headache and jaw pain and flushed skin. The sickness and stomach upsets resulted in me being placed on drips because of dehydration and I was unable to eat or drink anything, not even a mouthful of water and became bedridden for days. It then subsided and I had minimum side effects by the time I was allowed home.

Then came the time for the first increase, for this I reasoned well maybe I'm used to the drug it may be easier this time, but this wasn't to be. I came into hospital just supposedly for the weekend and two weeks later after a repeat performance of last time I was allowed home. This time I was still being sick and felt very ill and it took a few months to feel properly back on my feet again, but I have never really been the same again and I still have some side effects two years on and have to have medication for the sickness and stomach upsets and suffer badly from headache and flushed skin. On the other hand the drug saved my life and has improved my Pulmonary Hypertension. Love this drug; hate this drug.

'True joy is that which comes from progress and success.'

Now the consultant is aware of all this, but thinks there may be a chance my body may cope better this time, as I am now well established on the drug, but she cannot promise anything and she did give me a wry smile when she mentioned coming in hospital just for the weekend, indicating well yes it may be weeks!  

Spring has sprung!

So for me it is quite a big deal to put myself through this again, but my biggest worry is what state I will be left in afterwards. It will almost definitely keep my Pulmonary Hypertension at bay and maybe improve my exercise capacity, but it may come at a price of worsening side effects that drag my quality of life back down. We also discussed the transplant with her, and again found ourselves considering similar odds for surviving PH and surviving transplant. As Rob says, for both situations, 'we are stuck between a rock and a hard place'. Impossible decisions. Decisions we wish we hadn't got to make. Sleepless nights. Tears.

Well the transplant decision is made, sometimes I wish I'd just had my transplant right away and then all this would be taken off me, but then again I would be facing new problems, but at least the deed would have been done; however, the transplant decision is made, questioned sometimes and that's healthy I suppose, but the same answer is always forthcoming, transplant is my way forward and the only way I can see to make some proper progress in my future.

I have also made the other decision, a no brainer really in the cold light of day, Pulmonary Hypertension is life threatening, sickness and upset stomachs are not, so with some trepidation, well a lot of trepidation, I am going back in hospital for the increase and I will just have to get on with it afterwards whatever happens. I have asked if I may wait until after Sarah's twenty first, as I don't want to ruin things for the surprise plans we have made. So it looks like the middle of March will be the time.

Sometimes it's along and winding path before you get there! 

So I've got a few weeks respite to pick myself up, brush myself down and go for it. As a friend of ours once said when facing secondary cancer, 'time to get my walking boots out and get ready to climb the next mountain'. And she did, and I will! The consultant told me to stay positive, well for me being realistic is my positive in this matter. Expect what I have experienced before, after all that is all that I have got to measure things from and who knows I may be pleasantly surprised after all. Believing that all will go swimmingly is asking for a fall at the first hurdle if it it doesn't, but I do believe that we will all manage this as a family whatever happens, just as we have always done.

Decisions where the outcome is life changing or even life ending seem to be happening too often for us and Rob is wishing for the time when decisions we have to make are just simple ones again. Decision, decisions and more decisions about illness and life are a thing many sick people have to face and I know I am not on my own this week. One PH friend is facing a decision about life threatening treatment and another is facing the impossible decision about transplant. It would be so good to see into the future sometimes and not have to weigh things up on sterile medical data, which we often end up doing. So here's hoping anyone facing a tough decision this week, can come to a conclusion they feel brave enough to cope with, even if they are unsure in any way.

'People naturally like comfort and relaxation, but it is more satisfying to work hard and enjoy your achievements'

The most amazing news this week and news that gives me some strength and hope amongst all of this is that 147,000 people have signed up to be organ donors. How fantastic is that? Somewhere lives are going to be saved and again, I can't thank ITV enough for raising awareness of organ donation and the plight people like myself find themselves in. The bravery of the donors and the generosity of their families during such a testing and tragic time has also been discussed and the difficult times families have had to face losing a loved one while waiting for a transplant. People are discussing organ donation and that is a wonderful thing. It has been uplifting to play a little part in all of that and I'm sure there will be lots more opportunities along the way to continue the campaign. It was a busy week or so, nerve wracking and fun both at the same time and it's good to see such high rewards after such a big concerted effort by a lot of people.

Rob says that since I said, 'I would like to do something about raising awareness of organ donation and Pulmonary Hypertension, but I'm not sure what', back in autumn, we have managed to do quite well really, talking in the House of Commons, being on the local radio, being in the local papers and being on the regional and national news. We are really thankful for the opportunities that came our way to do this and I'm hoping it will not end there and we will seek out more opportunities to keep up the campaign in the future.

I have put the link to the ITV website below, which is full of transplant stories, so you can see it if you happened to miss anything (you probably needed to be out of the country for that), but really I just like scanning the page because both me and Stacie are on it, doing our little bits and it's a lovely souvenir of the week for us both!

 http://www.itv.com/fromtheheart/

The little proverbs are Arabic proverbs, three years ago during February half term, we were lucky enough to visit Dubai and every day a little proverb card was placed in our bedroom. I just came across the cards recently as I had saved them and thought them apt!   

     

Just a reminder if you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

     

Snowdrop Time

All has been a little quieter this weekend after  last week's busy events. We were pleased with Emma's report in the Welwyn Hatfield Times, which you can read from the link I have put below. Emma gave a true account of all we said to her when she came round to interview us and we hope it may spur a few more people to sign up to the donor register.

http://www.whtimes.co.uk/news/knebworth_heart_and_lung_patient_battles_to_raise_transplant_awareness_1_1936256

Rose is home from university for her reading week and we have done some relaxing things including going to the local theatre to see Romeo and Juliet and going to the cinema to see Life of Pi, which we thoroughly enjoyed. It is so nice to have her back and have her around, especially while Rob is at work. 

Every year year we also like to visit Benington Lordship, which is in Benington, a small and very picturesque village near Stevenage in Hertfordshire and near where we live. Benington Lordship was once a fortified site dating back to Saxon times and the remains of a Norman Motte and Bailey fort can be seen there. There is also a red brick manor house dating back to the 18th century and it is all set in pretty gardens with stunning views across the Hertfordshire landscape.  The owners open the gardens at certain times of year under the National Garden Scheme and every February they open up the grounds and gardens to the public as they have the most fabulous display of snowdrops. As the sun has been very welcomely shining this week and it's felt so springlike and uplifting we decided to visit and I think the snowdrops were also enjoying the warm sunshine as they were out in full bloom and most probably at their best. It was hard to imagine that the previous weekend they were covered in a blanket of snow.  

I always have a lovely image of Benington now at snowdrop time as we have visited the last two Februarys, but I also have mixed memories of this little Hertfordshire village too. Before I used to teach, I once accompanied Sarah's class on a geography trip here as a parent helper, she was in Year Two and only seven years of age. I was walking up a slight incline with the group I was looking after, when I became dizzy and fainted into the main road. I can remember coming round and I had hurt my leg and arm, some of the adults were fussing around me and I could hear Sarah crying. The teacher quickly whisked the children away to the venue we were heading towards and a couple of adults tended to me. One of them rang an ambulance, her husband happened to be an ambulance driver and a man came out of a house to help us and gave me a cushion to put my head on. In the end we cancelled the ambulance as I felt alright again, except for a grazed arm and bruised leg and I managed to carry on round on the trip, but we put a few groups together just to be safe. 

This was the faint that spurred me to go back to the doctor's again, after an initial visit a few years ago when I had fainted previously.  Following that I went to see a cardiologist at the local hospital and they ran extensive tests and also referred me to Harefield, where I had more tests and even had an 'event recorder' implanted on my heart to try and capture a faint. Two years later I had the recorder removed with just one faint recorded on it, they just could not pinpoint anything that looked untoward or anything looking wrong with my heart, so both the doctor's and myself were happy that my odd little faints now and again weren't really anything significant and there wasn't really anything more that could be done or investigated.

So I didn't worry too much when I had a faint now again, it usually happened when I had been sitting down a long time and then got up too quickly and ran upstairs or something, so to be preventative I just stopped jumping up too quickly from being sat down or running upstairs too fast. It would be a whole ten years later when things got decidedly worse that I went back to the doctor. Many Pulmonary Hypertension patients are unable to get an early diagnosis, it usually an average of at least two to four years to get diagnosed and by the time a diagnosis is made, the  disease has more often than not, wreaked its damage. 

I also have some lovely memories of Benington and the surrounding area. During the early years of what I now know was my Pulmonary Hypertension, after helping in school, I trained as a primary teacher and brought several classes on school trips to the nearby Astonbury Manor and Nature Reserve. I also undertook some projects on working outdoors with the children at one of my schools and attended a course run by a  nature conservationist in Benington and we got to explore around the Benington Lordship Gardens, while it was closed to the public and got them all to ourselves. The gentleman then came to help us in school with many projects we were undertaking to improve our school grounds for the children and we we ended up creating a nature trail, hedgerows, a meadow, an arboretum and restoring our woodland for the children to enjoy. So it was a very happy and worthwhile time in my life that started in Benington and its gardens too!

It's strange how one little place that I've only visited a few times can evoke such mixed and powerful memories. Now enjoying some early spring sunshine and snowdrops while I wait for my transplant  will be added to that list of significant memories.  

Here is the link for Benington Lordship Gardens: www.beningtonlordship.co.uk/   

Just a reminder if you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

         

Ready, Willing and Prepared!

The evening that followed the filming by ITN for 'From the Heart', Rob was just 'tweeting' around and was soon being followed by 106 Jack FM Hertfordshire, the local radio station for Hertfordshire. They then messaged him and asked if we would like to do an interview to raise awareness about organ donation, so an interview was arranged on the following morning ready to be broadcast on their Friday morning news programmes. Excellent timing just before the big ITV launch 'From the Heart'.  So excitement again on Thursday as Chris from Jack FM came round to record a radio interview.

Jack FM featured my interview on their hourly news bulletins from 6 in the morning until mid afternoon, so there was lots of air time given to it and hopefully it may have encouraged their listeners to sign up to the organ donor register. They have also put the news article on their website and the radio interview so hopefully many more people may have seen it on there too and signed up. So a big thank you to Chris and all at 106 Jack FM Hertfordshire for their help in spreading the word about the chronic shortage of organ donors and helping in my appeal to get people to sign up.

The link to 106 Jack FM Hertfordshire's broadcast, if you didn't hear it, is :

http://www.106jack.com/news/local-news/transplant/

The previous week I had also been contacted by Emma, a reporter from the Welwyn Hatfield Times, which is the local paper for my area, she had been following my blog and offered do a piece to help us spread awareness. We had already arranged this before I knew we would be part of the 'From the Heart' campaign by ITV, so again it turned out to be very well timed, as the article was planned for publication on Wednesday 13th February, the biggest day in the 'From the Heart' Campaign. So again, we really hope that the article will help bring organ donation to the forefront of people's minds and get people thinking about and discussing organ donation, especially when they are seeing a lot on TV about it.      

When we had been filmed by ITN, Lawrence had told us that our piece would probably be aired alongside another patient who was waiting for a heart and double lung transplant too. This would be a young Cystic Fibrosis patient, he explained, who he had interviewed that morning and he had been impressed with how bubbly, enthusiastic and full of life she was considering how poorly she was and that she was facing transplant.  When Emma came to interview us, she had a lot of empathy for our cause as she explained her cousin who had Cystic Fibrosis was currently in Papworth and waiting for a heart and lung transplant. Well you may guess the coincidence - yes it was the same lovely patient that Lawrence had interviewed, who would be featured with us when our ITV interview was to be broadcast! How is that for a small world? Rob and I have now been chatting with her and wish her well for her transplant and hope it comes soon.  

Hopefully, at some point I may be able to give you the link to this news article soon. On Friday morning Rob was also contacted by the Comet, a newspaper for North Hertfordshire and this week an article was published about us in that too. Again, I hope I can give you a link to this soon as well.

Ffffffreeeeezinggg!!!

We had planned to go up to Cumbria and Lancashire for a little break and to catch up with my family and friends and it was the third attempt we had made since I was ill in December. We postponed our Christmas visit because I had only just come out of hospital and didn't feel well enough to go and our proposed January visit was scuppered by snow. So we managed to get to Cumbria at last on Saturday, had lunch in our favourite pub, The Strickland Arms at Sizergh (www.ainscoughs.co.uk/Strickland-Arms/strickland-arms-home.html), spent Sunday catching up with family at my mum's in Lancashire and Monday catching up with friends. We had a lovely lunch out at another favourite pub in Arnside, The Albion (www.albionatarnside.co.uk/) which has fantastic views across to Grange-Over-Sands and the Lake District mountains beyond and then we drove over the Lyth Valley - a beautiful scenic drive- down into  Bowness on Windermere. It looked stunning in Bowness with the snow capped mountains, winter sunshine and the boats on Lake Windermere.

Cheeky swan!

In Bowness, there are many little shops to browse around, trouble is for me it's a little bit steep and hilly, but I've done it before and I just slowly took my time, walking very slowly and stopping when I needed to get my breath while pretending to look in a shop window. Every shop window was dressed for Valentine's Day and there were heart displays on show everywhere. It felt very poignant, the hearts had a different meaning to me and I was overwhelmingly reminded about my need for a new heart and the ITV From the Heart Campaign as I looked into every shop window.

Trust him to muscle in on the act!

On Tuesday we came home and our bit for ITV was aired on the main 6.30pm and 10 O'clock news programmes. There is something very surreal about seeing yourself on the TV. On the bit where they say 'coming up next', my picture flashed up and then a picture of the Pope followed, which felt very bizarre. True to form, that gave Rob and the girls a giggle, 'mum with the pope', what next? And then we were on the news and hopefully have helped play a little part in raising awareness of the need for people to sign up to the organ donor register.

http://www.itv.com/news/2013-02-12/from-the-heart-life-on-the-transplant-waiting-list-kathryn-graham/

As soon as we had been on air the first time, we were inundated with messages from friends and acquaintances saying they had signed up to be organ donors. My sister's son's school is going to run some special assemblies and put it in their newsletter and a colleague of Rob's has just donated £500 to the PHA Association UK. So a pretty fabulous, unexpected, overwhelming and humbling response from our families and friends!  

The following day I just happened to have the local Anglia news on TV, which was just pure luck, as we receive Anglia News in one of our rooms and in another get London local news. I had a bit of a shock as our news interview appeared again within a feature about both Addenbrookes and Papworth Transplant Centres. The link for that feature, which is an excellent feature calling for more organ donors, is below, just click on the big red 'From the Heart' logo.

http://www.itv.com/news/anglia/update/2013-02-13/itvs-from-the-heart-campaign/

Wednesday should have been more of a normal day - well except for Stacie, my friend, being on Daybreak that is, plus the special 'Tonight' programme and celebrity programme 'From the Heart' - so it became even more exciting when we found out we were on the news again too!

Link to Stacie & Megan on Daybreak:

http://www.itv.com/news/update/2013-02-13/i-stare-at-the-phone-waiting-for-that-call-about-a-donor/

Thursday, we tried to come back to earth a bit, with a visit to Papworth, for my bone density scans, these are in preparation for my expected transplant, to make sure my bones are strong enough before I will need to start taking steroids for the rest of my life post transplant. Steroids can cause osteoporosis and weakening of the bones when taken for a long time. All was done and dusted quickly in the clinic and before we drove up to Papworth, they had contacted us to say pop in and see the news crew while we were there. So after my scan we went to the Transplant Continuing Care Unit and as we walked in I thought gosh it looks busy, then realised that a big group of the people in there were the film crew, dressed in scrubs as they had been filming in the theatre. We got to meet the whole team and had a good chat about the last few weeks events. It all felt a little surreal sitting with a TV crew dressed in scrubs in my transplant clinic! It was good to get a chance to meet all of them and thank them for what they have done for us and everyone else in need of a life saving organ this week.

Today as I'm about to publish this, it is Friday, the past seven days have been hectic and so it is a resting day for me and the rest of the weekend, to catch myself up from all the excitement. I am so looking forward to weekend as Rose is coming home from university for a week and should be home tonight.    

I really want to thank ITV from the bottom of my heart for the coverage they have given to organ donation this week, it was reported earlier in the week that over 30,000 more people have signed up, so hopefully by the time I publish this blog that figure will have gone up even more significantly.  I am excited to find out just how big an impact this week's campaign has had and really hope it's helped. For me, not only has it been a big boost to raise awareness of organ donation, but somehow this week I don't feel quite so much on my own, somehow I don't feel quite so isolated being in this situation. Suddenly it seems the world has woken up to the plight we have found ourselves in, suddenly people are beginning to understand, suddenly I'm not just one of a few lone voices anymore. So thank you ITV.

My wait for my transplant is usually always there lurking in the background of my mind, but this week has been strange, first with all the talking in public about it and then the issues surrounding organ donation being constantly highlighted on TV. Transplant is at the forefront of and prominent in my mind this week. I think my awareness of my own situation has been heightened and if ever there is a time I was ready for this impending transplant, it is now. So I will keep hoping it will be soon.

Winter sunset, Lake Windermere 

 Just a reminder if you want to sign up click on: www.nhsbt.nhs.uk/

You can help us get the Government looking at organ donation by signing the epetition: http://epetitions.direct.gov.uk/petitions/38220 

From the Heart

Late last Friday afternoon I got a call from my Transplant Co-ordinator, she began the conversation with 'don't worry it's not your transplant call', as she always does, so I know not to start getting in a panic and went on to ask if Rob and I would like to be interviewed by ITN news about living on the transplant list. Of course we were happy to try and help. She explained how ITV are running a whole series of features, interviews and programmes during the whole of next week - starting Monday 11th - to help raise awareness of need for people to stop and think and register on the organ donor register. She explained that the ITN news are reporting from Papworth for their main news bulletins and will be filming for two weeks starting this week. This week they are filming interviews and features around and about the hospital and at various other locations with pre and post transplant patients and next week they will be broadcasting these features live from the hospital. They are also on standby should a transplant operation take place and I know several of us have agreed to have our transplant story filmed, should we be lucky enough to get the call, it would really be the icing on the cake for promoting organ donation should a transplant happen, so fingers crossed some lucky person gets their call.    

It was only after when I thought about this phone call, that I realised it hadn't even entered my head when the co-ordinator rang that it may be my actual call, it should have done really being the end of the week and end of the day. I think this is the result of waiting for so long, it's as though it isn't really going to happen and it's becoming a bit of a fantasy. I think I'm going to be in for one big shock when that call actually comes and I've needed to just remind myself that this will happen sometime.   

The filming was scheduled for Wednesday and as we got to the morning I began to feel a little nervous and apprehensive about what was going to happen. Do you ever stop for a minute and wonder where life has brought you? Here we were anticipating ITN news coming round ours to chat about waiting for a heart and lung transplant- a situation that would have been beyond our wildest imagination less than three years ago!  

Well they actually arrived and it wasn't a dream and we were even more surprised when we saw that the reporter was Lawrence McGinty, the Science and Medical Editor for ITV news. We have often seen him reporting on TV and had even joked in the past about how we need someone like him on the case of PH and Organ Donation and then here he was having a cuppa with us in our kitchen!  

It was all relaxed and informal, although I did feel nervous and think I did waffle on a bit; I hope I did manage to say some of the right things to get people thinking. I know too, that PH and organ donation are both huge topics and could be discussed for ever and a day, so to think of everything in just a few minutes, with lights and camera and people watching you intently was a difficult one, I knew I couldn't possibly say everything!  

We are so delighted with ITV, that they are taking the bull by the horns and giving organ donation this most valuable air time. It is a real boost for people in our situation to know that somebody, somewhere is standing up for our cause and people are getting together in a hugely co-ordinated and concerted effort to help us in a big way, at last we are not slipping by unnoticed. It has got to get people talking about organ donation and discussing it with their families and hopefully get lots of people coming forward to sign the organ donor register. I personally cannot begin to thank them enough and I will be staying tuned to the TV for most of the week next week! 

So what to watch out for each day starting Monday, February 11th:  

Daybreak

This Morning

Loose Women

ITV Lunchtime, early evening and evening news with features live from Papworth Hospital

Wednesday 13th 'Tonight' Programme and 'From the Heart' entertainment special

Daily local TV reports and features about transplant

And don't forget: Our interview with ITN news will most probably be on Monday lunch and early evening news, but keep an eye out; my friend Stacie on Daybreak on Wednesday 13th; follow Will Pope's story on Tonight on Wednesday evening!  

www.itv.com/presscentre/ep1week7/heart

Following our excitement of Wednesday, we have had a flurry of local media attention through my blog and a husband, who has taken to 'tweeting' about transplant and organ donation. So the week has continued being busy, busy and I will tell all about the excitement of the next few days in my next blog soon!

Meanwhile if you want to register as an organ donor: www.nhsbt.nhs.uk/  

Support the campaign for an 'opt out system for organ donation: http://epetitions.direct.gov.uk/petitions/38220

Birds, Spring and Doing Different Things

It is exactly one year since I logged into Blogger and learned how to set up a blog up and started writing my blog. I had kept a diary of all that happened to me in that first eighteen months of being diagnosed with PH and going on the Transplant List and wasn't quite sure what I would do with it, if anything, but I had by this time a notebook of hurriedly scrawled pencilled notes bursting at the seams just begging me to do something with it.  I ended up transferring it all into this blog and I am now on my 66th post!

delicious pud at Hambleton Hall

It's that time of year as we come into February that if you look really carefully you might just get a hint that Spring is around the corner, even though we are expecting some more snow this week! When I woke up this morning I could hear some birdsong and an odd tweet or two of the feathered kind and I've got bulbs pushing through in the garden, even bluebell shoots! The days seem just a little bit longer and there are daffodils and tulips in the shops, all just giving a promise of a brighter and warmer time to look forward to and some anticipation of warm sunshine - well I can live in hope of that too! I bought some daffodils for the house this weekend - yellow always looks so fresh and bright in February to cheer up the dreariness of winter- automatically it makes you feel uplifted.

Rob and I had a lovely few days away earlier last week, which was very relaxing and a real tonic to get out and about in another environment. We went to Rutland, which is only an hours drive away from us and is a small county sandwiched in between Leicestershire, Lincolnshire and Northamptonshire. It is only tiny, being only 17 miles east to west at its broadest and 18 miles north to south at its longest, but it is relatively unspoiled and you could even describe it as the Cotswolds in miniature or a bite size piece of the Lake District.

We had planned to stay here in November to enjoy a few Autumn walks - well walks of a fashion with me in tow - and to do a bit of Xmas shopping in Oakham, but had to cancel at the last minute because I lost my dad. We managed to re-arrange it for last week and hoped it would give us a lift after all the snow and dreariness of January. A large part of Rutland is covered by Rutland Water, an Anglian Water's drinking water reservoir with several large nature reserves and a visitor centre. It has a 25 mile circular track for walking and cycling and one day I have promised myself a proper long walk or better still a bike ride, which is impossible for me at the moment.

Rob and I visited the bird reserve on the Hambleton peninsular run by the Leicestershire and Rutland Wildlife Trust. We were wrapped up warm with scarves, wellies and the lot. It is a paradise for bird watching and after speaking to the warden we reckoned I could manage the walk to the nearest bird hide, which was about 350m away, just around what I manage to do around when I do my six minute walk tests! This time I would be able to amble more slowly to keep my breath. It was a mild January day and there was seating in the bird hide, so I could rest while we watched the birds before I had to attempt the return walk. I always have to check how far I have walked so I can weigh up whether I'm capable of and have the stamina for the walk back!

Warming stew at the Lord Nelson 

At first we couldn't see many birds then we started to see several cormorants ducking and darting around the water, there plenty of ducks and gulls and some flocks of geese and we were rewarded for our patience with a big flock of lapwings flying above the water then landing near to where we sat watching. While we wandered back we saw thrushes, goldfinches, tree sparrows, wrens, pheasants, robins and blue tits and great tits. So nature rewarded us for our efforts and it gave my spirits a great lift to be outdoors and enjoying the quiet of the reserve.

After that we needed to warm up again and we went off to Oakham, an interesting market town with a small castle, a museum, some bespoke shops and its own market place with stocks. We found a lovely pub and enjoyed a warming lamb stew with crusty bread. It was a quirky place to eat if you love old buildings, beams, fires and antiques. All in all the whole trip was well worth the wait, a real pick me up and really helped me to get thinking of springtime and that it wouldn't be long before we get warmer, milder and longer days. A lot to look forward to while I wait.

For information on Rutland: things to do, Accommodation, where to eat: www.discover-rutland.co.uk/  

And a couple of tried and tested places: www.hambletonhall.com/; www.finchsarms.co.uk/; www.thelordnelsonoakham.com; www.barnsdalegardens.co.uk; www.rutlandwater.org.uk/

View from Hambleton

On and off during our trip and during the rest of the week I thoroughly enjoyed reading 'Life of Pi'. Most of you will know that this is now a major film and Rob has been badgering me to go and watch it at the cinema, but I refused to go until I had read the book. Rob recommended me to read it a few years ago, so I thought I better read it so we can go to the film while it's still on at the cinema. Anyway I was transported from Rutland Water to the Pacific Ocean with a young shipwrecked boy and a tiger! It was well worth the read and I can't wait to see the film soon. After our busy start to the week in Rutland I paid the price for overdoing it later in the week. This is a usual thing to happen with PH, try to act like you are a normal person for a day or two and then you will be exhausted and hardly able to walk for the next day or two if you don't try and rest up. You constantly have to try and juggle how much you can cope with and how much you can manage. It is at those times when I know and can acknowledge deep down that I cannot go on like this for evermore and I do definitely need to get my transplant.

Oakham

I am publishing my blog a little early this week as Wednesday is possibly going to be an exciting day in our household and I might have more things to write about and tell you all by the end of the week. I will give you a clue and lots of you will probably get it - Valentine's week and From the Heart - so keep watching and if all goes to plan I might possibly have some interesting news and pictures of something going on in my home that I have just agreed to do, but we will have to see if it does really happen first!

We have just had another lovely weekend with friends to stay and enjoyed catching up on all our news and I was pleased and moved to hear that they had both signed up to be organ donors and they are spreading the word amongst their own family and friends. So if you haven't already:

sign up to the Organ Donor Register: www.nhsbt.nhs.uk/

sign the epetition for the 'opt-out' organ donor scheme: http://epetitions.direct.gov.uk/petitions/38220

Finally, don't forget to tell your family your wishes!

    

Being fed!

Wanting to be fed! Sorry can't take you with us to the pub!

A Dedication to 1500 Families and Many More ...

7500 plus people waiting for an organ across the UK

Today just happens to be my 500th day of waiting for my heart and lung transplant.

Now I think good luck and good fortune have both been on my side this last 500 days. I have managed to stay stable and reasonably well and I have managed to adjust to my life somehow living with Pulmonary Hypertension and being on the Transplant List. There have been ups and downs along the way, but I'm still lucky enough to be on the transplant list and still hoping and waiting.

1000 people on average die every year waiting for a transplant - that's 3 people a day! 

Not so for many people though, during these 500 days, not so have some stayed well enough to withstand transplant while they endure the long wait, not so have they managed to maintain their health, not so has the medication and treatment kept working wonders for them. During this 500 days many people will have lost that chance of hope that sparkles and twinkles like a star, possibly just a few moments away, enticingly in front of them, keeping them motivated that something can be done to bring them back from illness and back into a normal life again.

While I've been waiting full of hope for 500 days, 1500 will have died while waiting for their transplant, because of the chronic shortage of organ donors. They would have had to face the cruel fact that they will lose their battle against whatever illness they are enduring, they will have to suffer not only being unwell, but knowing they are going to leave their family and friends behind and all the richness that life offers.  

During these 500 days many more will also have been informed that the waiting time has run out and they are no longer fit for the transplant process, yet they will have to continue the battle with their illness, this time without any future hope before them.

96% believe donating organs is the right thing to do!

Imagine those 1500 patients and more have families and friends that will be left devastated and having to cope too, and the tragedy and rippling effect of this shortage of organ donors can be multiplied hundred fold.

I think if 1500 people had lost their lives in a tragic disaster, then there would be a national outpouring and demands and enquiries to know how such a tragedy could be averted, but we are losing all these people quietly and it is slipping by unnoticed, the tragedy is only unfolding within each family, so little gets done about it.

Only Around 30% - The amount of registered organ donors!

 
So why don't people sign the Organ Donor Register? Why is it all so complicated to get people to sign up?

70% -Haven't joined the organ donor register!

Well I only have to look at my own story to see some answers there. Three years ago I was happily getting on with my life, happily enjoying my family, happily enjoying my teaching and happily enjoying and making most of what life has to offer. Dare I say it? I was rather ignorant to the world of transplants because my life had never been affected personally by it. Of course I've been profoundly touched by illness and death, that is part of everyone's life, and not just through family and friends, but through various media too. That said, however, I had never met anyone with a very rare illness or anyone who had had a transplant. All the illnesses I have encountered through friends and family have been various cancers and more common heart and lung disorders and much of what is presented in the media concerns these diseases. That speaks for itself really, of course we need to know as much as possible and be fully aware about these diseases, it is more than likely at sometime in our lives we will be affected by them or someone we know will be and we want to be best informed how to cope or recognise the symptoms. I suppose it is just less common to be affected by transplant in your life.

Around 90% of families are supportive if the potential donor was on the NHS Organ Donor Register 

            Around 40% plus of families fail give consent  

So never having been personally affected and busy getting on with living, I didn't really give much thought to organ donation. I knew that Rob, my husband, carried a donor card and wished to donate his organs if he were to be a victim of tragic circumstances and knowing this don't think I would hesitate to give my consent to his organs being used to save lives.  I suppose, also, knowing this I thought if anything happened to me, then he would decide to do the same for me. I didn't ever really stop and consider how hard this might be for my family in tragic circumstances and I suppose I just pushed it to one side and thought well it's probably not going to happen to me anyway; these things happen to other people! I never in my wildest dreams stopped to consider that I might need a transplant, let alone three organs. I suppose no-one really likes to think too deeply about whether they may be in a tragic accident or not or that they may need a new organ, because they are incurably ill.

96% - The amount who would take an organ if they needed one!

So I guess just from my own experience that it is just complacency and a reluctance to confront the fact that you may be ill or die tragically and this being an unlikely event that means most people don't bother to sign the organ donor register. Let's face it, it isn't really a natural daily occurrence to be thinking about organ donation and transplant unless you are being affected by it somehow. Sometimes when we talk of transplant, it may imply that we are wishing someone to die, so that their organs can be used, but it really isn't like that at all. It's just hope that if there were to be an unavoidable tragic death, which does happen and often, then out of that tragedy some good will come and someone may be given a new life, because that is what the donor has wished for in the event of something tragic happening to them.    
         
So to save all these tragic deaths continuing, we have a culture that needs to change now and we need to make organ donation a natural process and thing to do, for those people who are willing to donate.

It was pleasing to find out this week from Papworth Hospital, that ITV/ITN are running a project to raise awareness of organ donation. They are planning to dedicate a day in February to a campaign to increase the awareness of the need for organ donors, under the title 'Have a Heart'. They plan special programmes to highlight the desperate need for more organ donors. Look out for 'Daybreak', possibly on the 13th when my very special and inspirational friend Stacie will be appearing to tell everyone about her life with Pulmonary Hypertension and what it is like living on the Transplant List. ITN are also hoping to film a real transplant operation taking place at Papworth Hospital, if one so happens to occur during the next week or so and I know several of us have consented to filming in the hope of raising awareness should we be lucky enough to get the call. It is the real stories, from patients themselves that can make a difference.  I'm really hoping that their programmes will get the momentum going and get people thinking and talking about transplant; it is fantastic that a big media organisation is going to do this promotion on our behalf.    

By registering to be an organ donor, you could save or enhance as a many as 9 lives!

Most people will never be in the predicament of either being an organ donor or an organ recipient, but a few of us do find ourselves in unusual positions. Of course my life changed profoundly two and a half years ago when I was diagnosed with a rare, incurable and eventually terminal disease and suddenly found myself needing not only one organ, but three. I was suddenly woken up to a whole new world of transplant, well not just woken up, but brutally kicked out of bed and shoved right into the middle of transplant's midst! Suddenly I was prepared to not just take one organ, but three and in turn prepared to give my organs to others should anything happen to me, also I've agreed to give my diseased organs to research to help others just for good measure.

So my attitude was changed in a very dramatic way, but luckily and hopefully for you, you won't to need to go through any of this drama to start making that small change; all you need to do to help this change happen is simply to stay on your computer for five more minutes and if you haven't done so already:

sign up to the Organ Donor Register: www.nhsbt.nhs.uk/

sign the epetition for the 'opt- out' organ donor scheme: http://epetitions.direct.gov.uk/petitions/38220

 

Finally, don't forget to tell your family your wishes!