Monday, 28 December 2015

Happy New Year 2016

Here we are January 2016 - another brand new year and with it that sense and feeling of making a brand new start. That's definitely the case for me. I have had the most fabulous 2015, I didn't really believe I could ever have another year that was as fabulous as the year before when I had my heart and lung transplant -  the amazing recovery I had and the wonderful opportunities to live life to the full that came my way. 

2015 continued in a similar vein though, and I was able to experience some very special milestones like Rose's 21st, Sarah and Oli's wedding and our twenty-fifth wedding anniversary. Rob and I decided to make a few more dreams come true and we were lucky enough to go travelling to new and old places, both at home and abroad. We enjoyed a cruise for the first time ever and we travelled overnight on the Orient Express from Venice to Prague. The Orient Express had always been a life long dream of mine from being a little girl. I wouldn't have been able to do any of these things if it hadn't been for the very special person and their family who gave me the gift of life. They are always in my thoughts and at Christmas time and at the start of a brand new year these thoughts become more poignant, as I know it will be a very difficult time for the family.  

After we had celebrated our silver wedding, I had another lovely and unexpected surprise in November when I received a local community award from the Hertfordshire Mercury for promoting organ donation over the last few years. I had also decided that now I'd done plenty of travelling and got some of that out of my system, it was time for me to have another dog. I'd had a dog over twenty years ago and there hadn't ever seemed a right time to have another and now the timing felt just right. We'd searched hard to find the right one for our family and been and chosen him ready to bring him home in early December. 

Nearing the end of November, I'd thought this fabulous year was ending on a big high when we brought our new puppy home. I had busily started organising as much as I could in readiness for Christmas during November because of the new puppy as I knew he was going to be demanding on my time especially in those first few weeks. Rob had joked to me, 'Are you planning a hospital stay?' The last time I'd been this organised, I spent much of December in hospital and only just managed to come home late on Christmas Eve. I laughed off Rob's comment. 

During the last week in November though, I started feeling unwell and after seeing my transplant team initially and then my GP and having a course of strong antibiotics, I ended up being rushed by ambulance to my local hospital and then later being transferred to Papworth Hospital. My transplant team managed to get to the bottom of the problem and I started intravenous treatment for a transplant related virus that my body had somehow triggered called CMV. CMV isn't usually that serious in ordinary people,  but in immunesuppresed people and unborn babies it can be a lethal problem if it becomes out of control. It all became quite scary as the virus had took hold so much that it didn't look as though the treatment was working. I was told at this point that I would be in hospital for a least a few weeks even if it did work. 

On Christmas Eve I had some tests results that showed things were beginning to improve and it was all taking time just because the levels of the virus were so high. I was given permission to come home for a few hours on Christmas Day and each day over the Christmas weekend. So, although I was still in hospital, it felt like a very special Christmas Day to be able to spend time at home with my family, albeit a bit strange being in hospital too, as I was the only person on the ward. Rob and Rose had by this time collected our new puppy. They had been sending me lots of pictures of him and I'd been so looking forward to meeting him. It was my best Christmas present meeting him at last on Christmas Day. I was so happy! 

On New Year's Eve, I was advised the virus levels were improving, still far too high, but lowering enough for me to go on oral medication, which meant I could come home properly and continue my treatment and recovery at home. I was so delighted. I'd thought by this time I may be starting my new year in hospital and finishing the year on a bit of a low. But no, the year ended as I'd first thought back in November, on a high. On a high, because I was back on my way to recovery after a serious blip and back with my family and my new puppy. 

What better motivation to recover than having therapeutic cuddles with a puppy and now he's able to have short ten or fifteen minute walks, so we are building up our walking together until we can both walk for longer and further together in the New Year; it's a fresh start for me once more this New Year, walking myself back to fitness with my new little fun loving campanion. I'm sure there's going to be more dreams coming true too, as I've been reminded with this recent blip that life is very fragile and there isn't time to waste. I've got plans afoot. My only New Year's resolution is to keep on living life to the full with my family and friends and making sure I do all those things I've always dreamed of and more. 

Happy New Year to everyone and make sure you make time to live some of those dreams! 

NB. I will write more about CMV soon for those interested and especially to raise some awareness of the signs, symptoms and treatments

Sunday, 6 December 2015

Winter Viruses and Bugs

Like all transplant patients I've had some ups and downs since my transplant with health issues. Mine have mainly been related to white blood cells falling too low and becoming neutropenic, kidney failure, high blood pressure and high cholesterol  - all a result of the harsh immosuppressants that we have to take forever. My issues are being constantly managed though and are part and parcel of life as a post transplant patient. We are prepared for all this and accept it willingly as part of our new lives. 

I've been very lucky that in the last couple of years I haven't had to deal with any serious infections, but a few weeks ago I managed to pick up a nasty virus. What's the big deal some people may think - everyone succumbes to viruses at this time of year? For a transplant patient it truly is a big deal because we don't have much of an immune system so it's easy for a virus to take hold and your body doesn't have much to fight it with so it takes a long while to shake infections and viruses off.

I have transplanted lungs too and they are very vulnerable when it comes to bugs and viruses that cause coughs and colds and infections in the respiratory tract. I have little 'cough' reflex like a normal person because my nerves were cut during the transplant operation and I only have half of my own windpipe, that is narrowed now where it joins my donor's - I have problems with this daily even without a virus. If a virus takes hold in transplanted lungs it can damage them and lead to chronic rejection and loss of lung function. 

I've been so lucky to get so far without picking anything up and up to now although this virus has made me very unwell and grounded me to a complete holt, I've been lucky as my lungs are still clear. Because transplant patients are so vulnerable when it comes to infection, I've had to check in with my transplant centre regularly and tell them how things are going. I've been back to hospital and had x-rays and tests and a thorough check by the transplant doctor and then I've been under the care of my GP. I've been given the super antibiotics that vulnerable patients are usually prescribed for a week and then I have to check back in with my transplant team to let them know if things are any better.

At the moment, it's not for going anywhere, so it's keep warm, rest and enjoy being safe indoors for me at the moment. It's been a little disappointing to miss some special Christmas events that we'd been looking forward to over the last few weeks, but on a positive note, we've managed to decorate the house ready for Christmas and organise our Christmas shopping and cards. I'm not sure how we thought we'd manage all this, we've been so busy and had so many plans, so it's made us stop and slow down. 

Just before I felt unwell I'd also just managed to send off the manuscript for my book for it's final edit. It's gone off for it's final proof read now with a professional editor, who knows nothing about me, my transplant or pulmonary hypertension. I felt I'd done everything I could do on my piece of work now, but needed someone who doesn't know me or anything about my medical background to undertake a final proof read for me. I've had lots of offers from friends and I thank everyone for their kind offers, but friends are often too nice and probably know too much about my personal story to step back and offer some constructive critiscm. 

I'm usually very hot on my grammar, spelling and punctuation and so is Rob - we are the grammar police!  But when you are writing down thoughts, ideas and all those feelings and emotions that have accompanied you for years it's another matter totally I discovered. That and then after being totally immersed for a year writing, redrafting and editing a huge document of over twenty chapters and thousands of words - something I've never done before - it was truly getting to the point where I just couldn't see mistakes any longer. Maybe there aren't any? I'm sure there are and amongst all the advice I've taken from my fellow writers, including professional authors, the main piece of advice is to ensure someone independent proof reads your work and also offers advice on clarity and consistency. So being new to all this, I decided on balance it was very sound advice to follow. 

I'm very excited I've reached this point and it does feel strange to think that someone I don't know at all will be reading my work. If all goes to plan, I hope to launch my book early in the New Year and that's something really positive I'm looking forward to. In the meantime now I'm catching up on my own reading while I've got a good excuse to curl up on the sofa under a blanket! 

Don't forget too #itstimetosign! 

Tuesday, 1 December 2015

The Opt Out System and #Time to Sign

Organ donation has once again been featured quite heavily in the media this last week or so, which is a fantastic thing as all publicity helps spread awareness. 

Firstly NHSBT have launched this year's Christmas Campaign #TimeToSign. It was announced that a total of 49000 people in the UK have had to wait for a transplant in the last decade. People are still waiting - some have been waiting for years. For some the wait is too long and they become unfit for transplant and lives are being lost. If there were more organ donors, they may have had a second chance. 

I've been campaigning to raise awareness of organ donation for over four years now - I'd like to say I've made a difference - many of us would - but the situation remains depressingly the same -  three people still die each day while waiting for a transplant. It hasn't changed. What if you or someone you love was waiting for a transplant, with your life on hold? That is the question we are asking this Christmas. Think about it. #TimeToSign if you can say 'yes' to organ donation. Just click on the link below.

I was pleased to be interviewed by the Welwyn Hatfield Times for the Xmas campaign once again this year and I've added the link below. The last time they interviewed me was the first Christmas after my transplant - back in 2013. I've come a long way since then!

Welwyn Hatfield Times News Item

Secondly, this is the week that the 'Opt Out' system comes into force in Wales - this means that Welsh citizens will automatically be on the organ donor register if they have not recorded an organ donation decision already (either opt in or opt out). Those that do register their choice to be organ donors can choose to donate all or any specific organs and people can also choose to opt out and register that they do not wish to be organ donors. Those that decide to do nothing will be treated as having no objection to donating any of their organs.
It is hoped that this may increase the number of organ donors available by at least 25%. It is a subtle change to how things work in England but there is a lot of hope that it will make a difference as we seem to be at a standstill with the current system we have.

It is known that 90% of the general public are in favour of organ donation and would take an organ if they needed one, yet only around 30% are signed up and again no matter how much campaigning is done these figures don't change. It is very clear that some changes to our current system need to made and this appears to be a sensible way forward to try and increase the amount of people on the register.

It will be interesting to see how this may change current statistics where three people still die each day waiting for an organ because there's a shortage of organ donors and whether England, Scotland and Ireland will follow.

One of the most important things though - whatever system we have in place - is the discussion that is needed between family members to ensure that everyone knows what each other's views are on organ donation. At the moment organ donations are being restricted because families often override a loved one's decision to donate. This is often because they simply do not know what their loved one's views were on organ donation and organ donation hadn't ever been discussed. It is a harrowing decision to make for any family, but easier if families know what their loved ones wishes are.

Our culture in the UK of not discussing dying, death and illness is a thing that needs to change if the situation is to be improved. I think we have a strange culture sometimes when illness and death affect everyone, yet we all brush it under the carpet as though it doesn't happen. I'm not advocating that we all talk doom and gloom everyday, just that sometimes discussions on these matters need to be had - it should be natural to have some discussion on wills, dying wishes and amongst these organ donation. It is proven that family consent rates to organ donation are higher when the family has had the 'discussion'.

Yesterday I was on BBC Three Counties Radio, following the changes in Wales, discussing my transplant and the difference it has made and the hope that the new changes may bring to those who are waiting.

All in all, there's been much talk on organ donation in the media and with that hopefully more awareness and more discussion amongst families.

Thursday, 26 November 2015

The Hertfordshire Mercury and Herts and Essex Observer Community Awards

I was very privileged to be invited to attend the Hertfordshire Mercury and Herts and Essex Observer Community Awards on Monday evening, as I had been nominated for an 'Unsung Hero' award because of my campaigning to raise awareness of organ donation and was one of the finalists. 

Rob and Sarah attended with me and we had a wonderful time starting with a drinks reception, where we were made to feel really welcome and then we were spoiled with a lovely three course dinner before the awards ceremony began. We were entertained by a very talented guitarist and singer - Roxy Searle - and we enjoyed some magical tricks during dinner. 

There were a range of categories that people had been nominated for: Carer of the Year, Young Achiever, Unsung Hero, Volunteer of the Year, Good Friend, Lifetime Achievement and Courageous Young Person. It was amazing to hear of all the various accomplishments and achievements that everyone had made - especially those of the children - everyone's stories were truly inspiring. 

All our stories were shared with the audience and I was pleased that the presenters stated some of the facts surrounding organ donation - especially informing the audience of the fact that three people die each day waiting for a transplant. 

was delighted to be awarded a highly commended 'Unsung Hero' award and received a beautiful bouquet of flowers and box of chocolates too. The winner of my category was a gentleman who suffers with muscular dystrophy and he had set up a foundation which offers experience days for other muscular dystrophy sufferers. 

One of the loveliest things about the whole evening was that we were told to just sit back, relax and enjoy ourselves and we were able to do just that. It was a very memorable and special evening and I think we all came home feeling very relaxed and pampered and that it had been a total pleasure to have been included in the event. 

Of course, the unsung heroes in my world are those that sign up to the organ donation register and those that have given the gift of life. My donor will always be my unsung hero.

Wednesday, 18 November 2015

The Gift of Life

After watching the news this week, the most poignant events that have overridden everything are the terrorist attacks and developments unfolding in Paris. I think this week has brought home to everyone how fragile life can be and just how much we should value every day. It's been shocking to see just on the TV and the thought to have been there amongst it is unimaginable. Paris is a place I love and I have so many happy memories of wonderful times there - it's difficult to associate this violence with such a beautiful and vibrant city.

It's beyond imagination that there are people who have so little value for life - both their own and the lives of others. There are no words to describe the gulf between these militant few and the majority of us ordinary people just wishing to live our lives peacefully. I think of the contrast between our medical staff who fight hard every day to save lives like mine and then those who recklessly destroy it with no care or thought -there isn't a bridge that can cross it. My thoughts and prayers go out to everyone in Paris and everyone affected by the destruction there this week. 

I have had a few clinic visits recently and at my latest one this week was told my new heart and lungs are in pristine condition - so I was thrilled and delighted at that. I'm still juggling problems with high blood pressure, chronic kidney disease and now the latest problem is high cholesterol. These have been caused by my immunesuppressant drugs so there's been quite a bit of changing medication and blood tests going on to ensure that things are kept in the best possible order. I was supposed to have an infusion  to help my bones because of osteoporosis, which is another side effect of the drugs, but they couldn't go ahead with it as it's too damaging for my kidneys, so I've been given another oral drug to try and help this instead. It all seems to be all about juggling the medication to keep us patients in optimal condition and I'm pleased I have such a knowledgable team of medics looking after me.

These are all problems that I was made aware about before my transplant and they are all very common amongst transplant patients. It's always been a case of swapping one set of problems for another, but with the hope of having a much better quality of life. My transplant has certainly given me that and I try and value all that my donor has given me every day. To hear the consultant say that my heart and lungs are in pristine condition is a pretty wonderful and encouraging thing. It always brings it home to me how life is so very precious.

A few weeks ago I was nominated for an 'Unsung Hero' award for my local paper's - the Hertfordshire Mercury -  Community Awards. My nomination was for promoting awareness of Pulmonary Hypertension and Organ Donation. It's something of an honour, although the real unsung heroes are my donor, their family and the medical teams that fought so hard to keep me alive. Because of my nomination, the paper did a feature about me and my transplant, so I was delighted that PH and organ donation made it in the papers once more. That's what it's all about for me - raising awareness in the hope that it may help someone else one day - in the same way I've been helped.

I had the wonderful news this week that I am one of the finalists, so once again I'm delighted. Next week we are off to the awards ceremony, which will be held at Hanbury Manor in Ware. I'm delighted because hopefully the causes of PH and Organ Donation will have another mention and to another new audience at the awards ceremony. It's not important to me about winning - it isn't about winning at all - just important that there will be another mention of these causes that are dear to my heart. There will be a drinks reception, dinner and then the awards ceremony, so it will be a lovely event to take part in. It will be a privilege and I'm looking forward to it.

It's been a week that's highlighted just how much life is so precious and needs to be enjoyed and embraced to the full. The gift of life is the most ultimate gift we have.

Wednesday, 11 November 2015

Ten Thousand Steps and a Dog

When we went away recently I bought a Fitbit HR Charge at the airport, so I could have an idea just how far I was actually walking while sightseeing. It's turned out to be quite a good gadget because it measures the amount of steps you make, how far you've actually walked, how many steps or stairs you've climbed, your heart rate, calories burned and even how well you sleep. You can also input your calorie intake and the water you've drunk if you want to, although I haven't bothered too much with this as I don't want to start becoming obsessed with what I eat.

Always concsious about my fitness these days and working on becoming fitter, I've found it really useful. It's also given me an insight into my sleeping patterns, which are quite unsettled because of the immunosuppressant drugs I have to take. 

On holiday we were walking an average of 12,000 steps a day and when I came back I felt really healthy and well with all the exercise and fresh air, so I've tried to aim towards walking 10,000 steps a day and go out in the fresh air as much as possible. On some of the lovely autumn days we've had this has been reasonably easy, but now we seem to be having those dismal and, at the moment often windy and wet, November days -  it feels more of a struggle.

I still have my exercise bike, which I haven't used too often since my recovery, as I do find it boring and tedious compared to walking outside in the fresh air accompanied by my camera, seeing the wildlife and plants. I'm back using it a little more now though, but it's difficult to be motivated with it any more. I use my WiiFit too and do the step activities on there as well as the yoga exercises. I love the yoga and try to do that as much as I can. I can be a bit wobbly with some of the yoga poses though because of my drugs, one of them makes me shaky, so often the trainer on the WiiFit keeps telling me my balance is bad! 

I love it when I walk Alfie, Sarah's and Oli's working cocker spaniel and when I dog sit and have him for the day, I find it's more than easy to break my target of 10,000 steps and more - it makes me go out in all weathers. Today we've been out together a few times, one of them a long walk and not only have I been walking, but just controlling him on the lead and throwing his ball feels good for strengthening my arms - they are still a bit weak even two years after my transplant. 

For quite a while now we've been thinking about having a dog again, it's 21 years since we've had a dog, but I think it will help me become fitter and motivate me to be outside in the fresh air when the weather isn't so good. I believe that exercise is more enjoyable if you can chose something you love doing rather than force yourself to do things that feel tedious.

At weekend we went to see some cocker spaniel puppies and we fell in love with them all, but there was one that stood out as 'the one' for us. Hopefully we will be picking him up in a few weeks time, as he's too young yet to leave his mother and the rest of the litter. Watch this space, hopefully he's coming soon! 

Saturday, 31 October 2015

Looking to the Year Ahead...

For me, autumn has always been a little like New Year, a time for a fresh start. I think it's after being in the teaching profession and working in school and the new school year starting in September. Autumn was always a time to reflect and plan for the year ahead. Now autumn will always be a very significant time in my life as it's the season I received my transplant and my second chance at life. Autumn, therefore, feels very poignant as a time to think ahead and into the next year.

I remember thinking how am I ever going to have a better year than the first year after my transplant. It was such an amazing year being able to do so many things that I'd believed I'd never do again and have so many wonderful new opportunities having been given my life back. Now I've just passed the two year anniversary of my transplant and I'm thinking the same yet again and wondering what my third year post transplant is going to bring. So I'm hoping and planning for it to be another good one. 

Health is always going to be one of my highest priorities in having another good year. I can only try my best to remain as healthy as possible with exercise and diet and following the advice given by my transplant team, who continue to look after me well. Autumn is flu jab time, so I had mine last week - it's another preventative measure in the hope of keeping my lovely new lungs working well. At the moment they work beautifully and I'm trying hard to keep it that way. Sometimes I feel like it's a game of dodging in and out amongst all the coughs, colds and sneezes. It always surprises me how many people think it's ok to cough and splutter all over others without a second thought - or maybe it's just me being more aware or even paranoid!

Another priority will always be campaigning to raise awareness of Pulmonary Hypertension and Organ Donation and I've been planning for the year ahead already on this front. For the last year or so, as many of you already know, I've been writing a memoir all about my journey with Pulmonary Hypertension and through transplant. I'm hoping it will give readers a valuable insight into what it's like to be diagnosed with and live with a life threatening, rare and terminal condition, the difficulties coping with a long wait for a transplant, as well as undergoing a major transplant operation and the life changing differences a transplant can make. I hope it will be of interest to anyone affected by either Pulmonary Hypertension or transplant or both, as well as anyone suffering with any type of life threatening or chronic illness. 

Hopefully it may appeal to a more general audience too, as it is about surviving against all the odds and a miracle happening! I'm planning my book launch for early in the new year and hopefully this will help renew and refresh my campaign to raise awareness and through my book I may be able to reach new audiences. I hope to raise some funds for PH genetic research and transplant support at Papworth hospital if anyone buys it! For me, it's a big project and as well as raising awareness for PH and organ donation, I'm personally very excited about it and looking forward to having my own book published and giving my campaign to raise awareness a new lease of life.

Through my hospital, I've also become involved with several patient focus and advisory groups over the last year, which has been interesting and is leading to more and more interesting projects such as  working with researchers and university students and of course work that is related to organ donation and transplant. I'm also part of the Transplant Patients Representative Group at Papworth and we are currently working with the Transplant Team on some new ideas.

One of the problems many patients face after overcoming many years of illness is finding a role and purpose in life once more and that takes time and I believe it's part of the recovery process. I'm hoping all these new avenues will develop and continue to keep me busy - they certainly have until now. I'm sure there will be unexpected surprises too -  I hope so and I'm excited to see what life brings next! 

Thanks for taking your time to read and to all my regular readers,

Kath x

PS. I've been working on this blog and my other social media sites in readiness for my book launch early next year.

Most importantly, I've changed my blog URL link for this blog - 'Life is for the Living' - to: 

So if you have any links to my blog they will need to be changed to the new link if you'd like to continue following. 

I have a new author Facebook page so you can track my book progress and see where I'm up to in my writing process. It'd be fantastic if you would click on the page below and 'like' and 'share'.

Friday, 23 October 2015

Two Years On - Thanks to my Donor

I've been lucky enough to have had my new healthy heart and lungs for two whole years now. Every extra day of new life has been a bonus and always will be. Thanks to my donor I've been able to do so much, see so many things and live life to the full. I didn't ever think my first year post transplant could be surpassed, but this second year has been another fabulous one. It's been extra special because I've been able to celebrate my daughter Rose's twenty-first birthday and also Sarah's marriage to Oli earlier on in the year. These are family celebrations I wouldn't have been well enough or even alive to see if it hadn't been for the generosity of my donor.

The day before my transplant anniversary is our wedding anniversary and the day after is Rob's birthday, so it's a busy time in our family for celebrations. This year it was our 25th wedding anniversary - the big silver one and one I didn't ever expect to see a few years ago. We decided to do something extra special and have the holiday of a lifetime to celebrate all three occasions. 

I can only say an enormous thank you to my donor, my donor's family, the transplant team who tirelessly worked to save my life and still give me such excellent ongoing care and all my family and friends who've supported me and still do.  

I was able to visit many new places and have some new and wonderful experiences all thanks to my donor and the very special gift of my new heart and lungs. I visited new cities, went on a cruise for the first time ever and travelled overnight on the Orient Express - something I've always dreamed of doing since being a child! There aren't any words to describe how organ donation can make such a huge difference to a family and how having a second chance at life is such an amazing gift.

Please think about signing up to the organ donor register and discuss organ donation with your family if you haven't already done so - three people a day still lose their lives waiting for a transplant. I know I've been extremely lucky - organ donation truly does make such a difference - it gives independence back and an ability to do simple things again such as bathing, walking, cooking and even pushing a supermarket trolly around. The special moments we've enjoyed this last few weeks are just the icing on the cake when you've been given back those more simple and basic things in life. It's those simple things that really matter and make such a difference, as well as being given extra time with your loved ones to make as many new memories as you can.


The Ship




The Orient Express


 We visited many beautiful churches while we were away giving us chance to stop, reflect and give thanks to my donor - my donor and their family are always in our thoughts.