I have haemochromatosis which was diagnosed about four and a half years ago. I have had increasing problems with my liver and it has culminated in cirrhosis and a whole heap of problems related to that. My doctor is referring me for assessment for a liver transplant and I am hoping to go to the Birmingham unit. I actually live in Wales but the Birmingham unit would probably be the closest to me.
I have high-functioning autism and do not cope well with sudden things and so this whole situation (the transplant referral) is still freaking me out a LOT! I am someone who really only functions well with definite things and, of course, none of this is definite (in as much as they don't say, you will have your surgery on such and such a date and so on).
I have not yet been to Birmingham and am concerned about visiting a new environment but I may possibly go for basic hospital visit before the assessment in order that I can work out how to facilitate my needs, my autistic needs, during the assessment.
I still don't fully understand why, if I have a transplant, then the new liver doesn't just develop the same problems which I already have as the haemochromatosis isn't going to go away but hopefully there may be someone else on the forum who has the condition and perhaps has been through this process.
Please forgive me if I am sounding utterly ridiculous and dim! This is all new to me and I am currently still in something of a panic about it all
Anyway, I expect I will calm down! Hallo to everyone and thank you for letting me be a part of your forum.