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.