So this afternoon I went a place I swore I would never go back to again. I'm not going to name names but it was my local transplant centre.
The last time I was at this hospital... Well let’s just say the consultant and I had a fatal fall out. He told me at 17 to go live my life because I could if I wanted to and I was just choosing not to and there’s nothing more he could do because there was nothing more to be done anyway.
I had the diagnosis of a lung disease which was serious and progressive but that didn't seem to matter and although I had originally gone to that hospital for a transplant assessment it was pretty clear I wasn't going to get one there.
I wasn't happy with what he said to me and without asking his permission I asked to be referred by my GP to a top
He didn't like this and after my referral he wrote a letter, a series of letters, to every physician I had ever met in my entire life stating quite clearly I had psychological issues and whatever was wrong with me lung and diaphragm wise was completely within my control and I would become ill at difficult times i.e. when he was on leave and not in the building just for more attention.
He made out I was completely none compliant with my medication. Which is very untrue, of course I'm gonna say that but taking tablets and nebulisers is something I've done for years and although I wouldn't say I enjoy doing them, they're a chore but they're something I can do to make/keep myself well and that gives me some piece of mind that what I'm doing is making that difference and I'm doing the best I can for myself because nobody else can do anything for me! There was one tablet which I had an issue with and those taking it will understand why, at that time I was on a hefty dose of Ferrous Sulphate that was the only tablet I hated taking and would try and avoid and that’s how my 'major none compliancy' came about. Ferrous Sulphate is an evil drug it left me hunched over a water bottle most of the day after taking it and dashing to the loo and from talking to a doctor friend of mine compliancy issues with Ferrous Sulphate are very, very common just purely due to its nasty side affects.
Since all this emerged my
So anyway I saw the transplant consultant this afternoon and he went over all the issues why transplant isn't an option for me here in the
- I'm not physically fit, mobile or well enough, having just spent a month in bed in a hospice that doesn't surprise me much.
- My weight is unstable (I have lost 2 stone recently unintentionally).
- The psychological and compliancy issues have to be investigated and ruled out completely (post transplant drug none compliancy is very dangerous).
- Diaphragmatic issues need to be explored further.
- I also need a proper diagnosis for my lung disease at the moment its 'Idiopathic Interstitial Lung Disease' which basically means: An unknown lung disease which affects the lung tissue, my consultant believes its some sort of Interstitial Bronchiolitis or Obliterative Bronchiolitis but we don't know for sure. Knowing would mean we would know if it could strike again post transplant.
- I am currently on 30mg of Prednisolone a drug they also use alot of post transplant and they don't like you being on more than 10mg a day pre transplant due infection and wound healing issues.
- I have osteoporosis - That could cause problems with bone healing post transplant.
- Lastly the
UKlung transplant list is just too long, you could wait upto 4yrs for a donor in the that is time I really don't have. It would be such a shame to work on the other issues when the list is just too long anyway. UK
You see how my rant above links in now?
The above list seems like a long one but they are or most are things that can or could be worked on if we had the time and really wanted to make it work in the
So what do I do now?!
I think having had some time to reflect this afternoon I need to carry on fund raising to get to Duke because I don't have the time to wait around for these lungs in the