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.