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.
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dall05
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Thanks bernice, I guess if I can fix myself then the lungs that could be destined for me will go to someone else so it a win win situation for all concerned.
Hi Tony or should i say superman that is terrific just think what a xmas present that would be for you and your family and all your friends here, This is all down to your hard work you really deserve it keep it going, i;m having a bad time with my RA constant 24/7 severe pain in my wrists but still at my.work 4 days next week then full time if i want.MC
Thanks MC, it seems as though all the hard work is paying off so the next 3 months will be pretty important as I'll push for even more improvement. If I can improve then there might be a massive decision to make around Christmas time. At the end of the day that will be down to me and the family but until then I'll carry on doing the same and see where it leads.
I wish I could help you with your RA MC but I guess all we can do is hope it settles down quickly or they find the right drug to fix it.
I never thought this situation was possible but it does show that it could be possible to climb out of this very deep hole. The transplant consultant says the decision is normally a no brainer as his patients are normally getting worse but with me the picture isn't quite so clear cut.
hi Tony my god im knackered and puffed felt like i was jogging next to you ,need a west now lol. my goodness what strength of mind you have and determination!!! Gogo gadget,will keep everything crossed for a positve out come you can do it. Janexx
I'm not on the list yet but have told its likely I will need one and I have had a number of tests. My view is that if I coudl stay as I am forever I wouldn't take one. I lead a virtually nromal life - the only thing I dont' really do is climb mountains (I do wish i could). But I am willing to accept this if I can just stay as healthy as i can without the trauma and relatively short life expectancy that comes with a transplant. You have utterly inspired me. I need to knuckle down and lose this weight and up my exercise (whcih I have let go these past couple of weeks). I am off down to the pool!
Hi Dall05, I haven't been on the site due to finding out I have other illnesses that I am still having to contend with but hey ho.... I wondered how you got on with your lung transplant and there you are in training for the next marathon.... Absolutely brill... I hope that this is still the case and all is going well for you!
Absolutley brilliant news Tony,! Bet Rob was standing on the touch-line cheering you on like mad! he said on his last 6mn walk he only saw the door at the end of the corridor everything else was just a grey tunnel. Take care Tony ATB...... AL
Hi AL, I remember that comment about Rob's last 6 minute walk test and the grey tunnel vision bit. I thought that was a good description as I too get the tunnel vision thing going when charging up and down those long corridors at the QE.
Its good to see you posting AL as you must be having a tough time of it, my heart goes out to you.
I will think of you and Rob when I'm out walking up the Malvern's and trying to break a new record or two and if Rob's there cheering who knows what I might achieve.
Tony xx
Hi Tony must have missed this one, but good AL spotted it and brought back into view (thanks AL)
It is brilliant Tony, you keep going doing what your are doing, going from strength to strength. You are an inspiration for all.
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) 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.
. 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. 
Update - I saw rheumologist today 
Dental Care for housebound person
Decreasing supplemental oxygen…
Dont panic.All I could think of was Corporal Jones.
Bereavement and loss.
