Up The Farway Tree

Irrational Thinking

So, I had a clinic appointment yesterday and got the best report I've had for a long time. I have managed to put on about 4kg since my admission in January, so am now about the heaviest I have ever been. I am on medication to help me gain weight, so am able to reduce the strength of this now, with a view to stopping it should I continue with this trend. My lung function was also up, which may be related to the weight gain, or just reflecting this period of stability. My oxygen levels were a little low, but they said as long as I wasn't symptomatic, I don't have to use the oxygen during the day if I don't feel I need it. So, overall an excellent report.

You would think I would be jumping for joy, but instead I reverted into anxious, panicky mode and declared that perhaps I didn't in fact need a transplant any more. I suggested that Newcastle may consider me too well if I continued to be stable, and would remove me from the list. This is nothing more than a figment of my imagination, but something that continues to haunt me whenever I have a period of stability. I think it largely stems from the difficulty I have always had in believing I am ill enough to require transplant, and my continual need to analyse the decision to be listed, based on however I currently feel. Don't get me wrong, it is not that I don't want to be called, because I desperately do. My life has changed beyond recognition in the past 2 years and I wholeheartedly want to be given that second chance to start living again. It's just that I always feel there is someone else who needs it more, someone else more deserving. Yet I also know that if I were to become that person who needs it most, then I have also started to move out of that window in which transplantation is most successful. You need to be strong to get a transplant, you need to be a good weight and you need to be as stable as possible; so technically now is the perfect time for me to be called.

My doctor managed to take my slightly hysterical comments seriously, and reassured me that yes, I definitely did need a transplant and that my decline in health over the past two years has confirmed this. He also told me that after my review with the Newcastle team in November, the consultant stated in his letter that I urgently needed a transplant. I guess maybe he knows more about it than I do...

I'm sure most of what I am saying will make little sense to people but I thought I would share it anyway. This road towards transplant is a difficult one; its not only about the physical health because the emotional journey is probably even more turbulent. Although I have a wonderful support network, it can still feel very lonely at times, especially when you have a tendency to think too much, and plenty time in which to do it.

So I guess the moral of that story is that I need to think less and do more...