Last Friday I made the decision to join the lung transplant waiting list after months of tests, conversations with the various medical teams and a whole lot of soul searching. Lung transplant was an option that I have thought about from a very early stage after my diagnosis and when the time came I think I was always going to make the decision to list.
As for all the risks, lung transplant is the only option that will potentially cure me of the lung disease and give me a fighting chance of a good quality of life for the long term. If all goes well I could have more than double my lung capacity again, opening up so many doors that have slowly been closing on me as the lung disease has developed over the last 8 or 9 years. I'll be able to run and swim again without worrying so much about my next breath. I'll be rid of the ever present risk of a pneumothorax (four and counting so far) which has prevented me from being able to fly for the last 3 or 4 years. Above all, I'll be able to start looking forward to getting on with life again in the knowledge that I won't have to be constantly adapting to a new normal with diminishing returns. There will be different challenges, of course, but there is the chance that for the first time that I can remember in such a long time I might actually be able to be a bit spontaneous and care free again. That possible future has got to be worth fighting for and I'm going to give it my best shot.
As of 8am this morning I am officially on the list which means that I could now be called up at any time. Part of me is extremely excited as today could, potentially, mark the beginning of the end of my time with lung disease. However, at the same time, the nerves have begun to properly kick in. A lung transplant is about as complicated and serious a procedure as you can ever undergo and mine is made even more complicated by the fact that they have to surgically cut one of the lungs to fit into the shrunken chest cavity on the right hand side. I try not to think too much about the transplant itself as it only adds to the anxiety and that little doubt that I know will naturally creep in at times.
Of course I don't know when the transplant will be. This makes it tough in many ways as you could get that call at any time so you're always going to be slightly on tenterhooks and can't really prepare bar having an overnight bag ready. However, at the same time if I had a time and date I think I'd be just as anxious I think if not more so as I got nearer and nearer to the date. Also, can anyone ever be fully prepared for something like a lung transplant?
I have to put my faith in the transplant team and focus in the meantime on the elements that I can control like eating, drinking and sleeping well. I've already made the decision to give up alcohol and my wife Lauren already has me on a healthy diet. I'm also going to keep doing what I can to stay fit and active as that's so important regardless of what happens with the transplant. Above all, I'm going to try and focus on living life as normally as I can.
There'll be up and down days, I know, but I know this is the right decision for me and I just have to focus on the possible gains that could be possible as a result of a successful transplant as they by far and away strip the cons. I've also got to remind myself that I have lots of things otherwise in my favour - my blood tissue is such that I should have a high chance of compatibility with the majority of donor lungs, I'm relatively young, I'm comparatively fit and healthy despite the lung disease and the surgeon is confident that the additional adjustments in the transplanted right lung will be possible.
So today represents a significant landmark in my own journey with lung disease that I wanted to share with you all. Wishing everyone all the best and have everything crossed for anyone else who is also on the transplant waiting list.
Andy
Lung transplant Update
Lung transplant assessment waiting times
