Monday, 29 September 2014

One Year On

 

It is a whole year now since my transplant and we are spending this time quietly enjoying ourselves together and reflecting as a family.  It's been one amazing year not only with the incredible changes in my health, but also how we've been able to move on and get on with all of our lives once more. We have also had some amazing opportunities that have come our way to try and keep on raising awareness of PH and organ donation. 


Rob has managed to get back to work. He has decided to continue just part time, so that we can also enjoy precious time together and he also helps me with going for all my hospital appointments and all the opportunities we get to promote organ donation and PH. He always says he will never forget where we have come from, although we now have our lives back.


Sarah and Oli have both been promoted at work, have bought their own house and have got engaged. We are planning and looking forward to their wedding next year. Rose and David have both successfully completed their second year of university and have now both started work placements near home for their next third year. 


For me, this year has been completely life changing. As I got better and better I've been able to start doing things for the first time again, things that I thought I would never do again. Many of them are simple basic things that we all take for granted. Things like going for a walk; pushing a supermarket trolley; doing the ironing and even bathing and showering. I even find myself running every time I go upstairs just because I can. I don't think I will ever be able to take these things for granted ever again. I've got my independence back once more after years of relying on other people. I'm still finding I can do more and new things too. 



We've been given numerous opportunities to promote PH and organ donation and had some amazing experiences through doing so, from being on national TV and radio to photoshoots and makeovers, having our story in national papers and magazines and local ones too. We even got to visit10 Downing St. 

I'm working hard on writing my book now, which is keeping me busy and Rob and I have already got a couple of events organised in October to talk about PH and organ donation. I've been busy with my writing course and have another article being published in 'Cumbria' magazine soon. We've also both joined the Transplant Patient's Representative Group for the new Papworth Hospital to try and ensure that we can maintain the high level of ongoing care when the hospital moves to its new site, so that is keeping us busy too. 


The year has not been without some ups and downs, there is still more hospital for a few ongoing issues following my transplant and for ongoing care, but these pale into insignificance compared to what we have been through over the last few years. 

We have also seen some of our friends having to face very difficult times: friends struggling with their PH and friends having to endure too long a wait on the transplant list. We can only hope and pray that things can get better for everyone: that there may be a breakthrough to help treat and cure PH and that our friends get their calls for their transplants sooner, rather than later. This is why we try and take as many opportunities as we can to promote awareness of both organ donation and PH. 



We have also sadly and very tragically lost several friends during the past year too, which has been heartbreaking for all in our PH and transplant communities and devastating for their families. I don't think we can ever take life for granted and losing friends so tragically brings it home to us all once more how precious life is, how time with our loved ones is so very special and how lucky we are. 




Coming together as a family this last few days we have been able to celebrate my second chance at life and how we have been so lucky. That brings me finally to the most important person we are all thinking of on this very special day, one year on from my transplant, my wonderful donor. Tragically, September is always going to be a most difficult time for the family and especially today. There really are no words that we can say that can ever thank my donor or their family, we only hope that the legacy she has left for our family and the other recipients can bring some small comfort. We think of my donor and her family every day and every time I manage to do something that not very long ago I couldn't do. 

Today is for my donor, she has changed not only my life, but my family's and friends too. She has given me the most precious gift, that of new life and hope and also the gift of knowing how fragile life is and how it should be embraced and enjoyed while you can.