Hi all, kicked off with Height and weight (lost another couple of pounds ) Then it was bloods followed by a chest X ray. Now it was time for the record breaking attempt, The doctor connected the sats meter to my finger and the young transplant co-ordinator zeroed the measuring wheel. I had told them this was a record attempt and to get their jogging shoes on and so off we went down one of the very long corridors of torture they have at the QE Birmingham.
As usual the first 250 meters went pretty pain free but my breathing was getting faster and noisier the further I went. I kept my head down and it was tunnel vision on the way ahead, whew that corridor is long and busy. The co-ordinator was telling me to go right to the end of the corridor and swipe carding any doors that needed opening so that I could keep going. People were stairing at the 3 of us, there I was puffing like a freight train, concentrating on controlling my breathing and tying up legs, closely followed by the doc with his sats meter and the co-ordinator with a measuring wheel giving me instructions, Quite a strange site for those not in the know I suppose.
Anyway I was on the final leg now and heading back up that long corridor of pain, my legs were getting heavier and heavier but I was counting on that new record distance so nothing was going to stop me now. I felt like an olympic athlete on the finishing strait and just concentrated on getting one leg in front of another, It was my legs that were holding me back as they just don't get the oxygen they need now, the calf muscles in particular. The co-ordinator shouted stop, thats 6 minutes and she looked at me and said 495 meters , I looked at the doc and asked what my sats had dropped to and he said 69, . Well that was all done 'off oxygen' and I was quite pleased with my efforts as I had just added another 15 meters on top of my last record distance and this showed there was no deterioration in my condition. . You've got to be happy with that as the transplant team are only looking for and expecting deterioration and are not used to seeing improvement.
It was then on to seeing the consultant who said if my condition continues to improve and my lung function tests are favorable then he may consider advising me to come off the transplant list. .
He said its all about the risks that transplant involves balanced against weather I have enough reserve lung capacity to survive any future infection that may lie around the corner. Its a difficult call and Its a gamble either way on whats best for me and my future. Anyway he said well talk about again in 3 months at my next check up and come to a joint decision on whats best.
Thanks to anyone who got to the end of this long post and I hope this window into the life of a transplant patient has helped someone out there.
Tony. I'm in training now as it would be pretty good news to be told I no longer need a transplant, I can't really see this happening but I'm going to give it my very best effort.