Well all the tests and interrogating are finally over, I'm on the Transplant List!
Its been quite a journey from when I first heard the word Transplant mentioned around 12 months ago.
My consultant had just done a Bronchoscopy and lung wash out on me when he come to my bedside and asked would you consider lung transplantation. I dont know what he saw through that camera inside my lungs but it obviously was'nt good.
It came as a bit of a shock and I don't mind admitting a few tears came as I had only just climbed my way back from a very very deep hole.
The CT scan also showed that the fibrosis had progressed so there was no point in kidding myself to the fact I was going to get better. My answer was if you think thats whats needed then yes I'm up for it and the wheels were set in motion.
My consultant said it normally takes around 3 months before the transplant co-ordinator gets in touch so the waiting began. Three months went by and my next consultants meeting came round and it was at this point it was found my details had never reached Birmingham's QE so it all started all over again.
This time I was armed with the co-ordinators phone number so I don't mind admitting that due to not being phoned when promised on a number of occasions I became a bit of a pest. This is not in my nature at all but even my GP said this is what you have to do.
Stage 1 assessment was arranged and after a six minute walk, x ray, spirometry, and loads of different bloods being taken they decided I was ill enough but fit enough to go through to stage 2 assessment in three weeks time.
This was far more intense and involved a 4 day admission to hospital where they carried out an echocardiogram, Right heart catheter, chest x ray, abdominal ultra sound, MUGA scan, and a VQ scan. a 24 hour urine save, and a counselling/transplant talk. There was also another 6 minute walk test which I once again covered 408 metres, off oxygen. This was done walking around an oval nurses station with about 16 patients around the outside of the walls all watching me.
I got my head down and went for it and yes I really struggled the last 150 metres which did'nt go unnoticed by the watching crowd. Quite a few of them asked what it was all about through out my 4 day stay. None of them were there for lung conditions so the 6 minute walk test was new to them but I hope if there was any smokers amoung them they gave up there and then.
My lung condition was not caused from smoking but at least these cell mates of mine got to see what its like to suffer breathlessness first hand.
Stage 3 was completed today which involved signing the surgeons consent forms and waiting for the co-ordinator to ring me at home to confirm she had activated my name on the list.
Simple's en' it.
I hope this post will help anybody out there who's considering the road to lung transplant, it should give a rough idea of what has to be done. If anybody would like more details don't hesitate to ask.
Getting on the list is a massive step but it means nothing unless the phone call comes so its cross everything and wait.
Tony. Many thanks to all who have supported me up to this point, it really helps.
Written by
dall05
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I just don't know what to say but golly I am so excited for you if that is the right emotion. I don't know how you are supposed to feel in situations like yours but then who does all I can say now is I will be rooting for you.
Such thoroughness is why the transplant programme has had such success. Just for getting to where you are now shows that you want it to work, and that you will carry on the good work after the event. To agree to take this on shows your courage.
From someone who had the relatively minor operation of valves fitted to achieve lung volume reduction, I know that the decision is not as hard as those outside the loop think. The question 'Do you want to live longer, easier?' has only one answer. So I wish you 'Good Luck!' (although chance should have no place in this). Stay free of infection, and stay fit. Appreciate the help of your family. This is the nearest to a cure that the medics can get yet. Accept the gift of time, and use it as wisely as you can, by enjoying time with your family and friends. Educate others as to the benefits of what you have been given.
Tony, I wish you well, and success. And hope that you don't have too long a wait.
Breathe deep and easy
johnwr
Oh, Tony! I could not be more pleased. Many congratulations. I will drink a glass of wine to the success of the plan. xx
Tony Very good luck vibes I am sending you and a big smile And maybe you have helped some of those here that are struggling with their cigarette quitting as well as those in the hospital - very happy you made the list
Good to hear. Keep us updated and the best of luck.
Woohoo Tony!!! Buckets of well wishes to you,& of course your dear family,whom will be supporting you,through the big wait!!
That was a lovely journal about your lead up to transplant.Will look forward to the next one,about the transplant journeys! Fingers crossed,won't be to long.
Tony, being completely knew here, your post was a bit of a shock. I don't know why. It was wonderful to read. Such positivity coming through your words. It was as though your strength of resolve was giving me strength of hope. Even though we don't share the same situations by any imagination. I felt so part of your progress. Both through those stages and toward dealing with my own breathing problems. Thank you for writing and allowing me to maybe look at the face of something that I have not dared to peep behind the curtain at before. Good luck. Rib
Hi Tony
Thank you very much for this and I have everything crossed for you. I hope to go through those same tests too so it's nice to have a bit of background although I've had one or two already. I'm still undecided about whether I want one but once I've list this weight we will see what the outcomes are and where we go.
Thanks again for the insight and very best wishes,
Best wishes Tony, I look forward to reading your journey through the transplant, what an amazing world we live in now, it's good to hear good news. I hope you don't have to wait too long!
Hi dall05. Thank you for your detailed story - it certainly shows why I never made it to the transplant list - I was too far gone when they first took notice. Good luck - it's like winning the lottery by the sound of it. Frank
Well done Tony, I wish you all the luck in the world, & i,m sure you will be impressing everyone here with the courage & determination it must take to reach this stage! Karen xxx
Congratulations Tony and best wishes. I'm down the road behind you so most interested to read your story. The 6 minute walk without oxygen sounds harsh. Are you allowed to walk slowly? like amble? or is matron behind you with a big stick? I must admit that the vision of you walking in circles with matron poking you with a stick and all the inmates oggling through the windows in their hospital gowns gave me a quiet giggle. We must keep our humour. Again best wishes.
Great looking forward to hearing further good news. X
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looking forward to hearing further good news. X
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