As someone on here once said, a transplant isn't always a golden ticket to instant good health.
Since my transplant on 20th Jan 2016 my liver (I say mine, I still think of it is somebody else's) has been acting great. However the meds are a problem in their own right. My kidneys are playing up with creatinine at 161 and urea and efgr outside normal limits. My blood sugar is raised and was 24.2 a week ago. Certain times of the day I feel worse than before the transplant, but its all being managed by Birmingham QE. Hopefully it will get better as my meds are reduced.
They found a LOT of iron in my old liver and are suspecting Haemocromatosis but have yet to confirm it. How will I break THAT news to my brother and my children?
Haemochromatosis is easily controlled if you know about it, you simply give whole blood! It becomes a problem when you dont know about, it silently damages the Liver over along time.
Get you brother and kids to the doctors for tests, 12 monthly tests and your family will be fine im sure.
Hi Mike, Sorry to hear things are taking a while to settle post transplant. As you say, reduced meds will probably make a difference.
The haemochromatosis (GH) issue is interesting: first that there was no diagnosis (no suspicion?) pre transplant - did you have any symptoms (fatigue, heart issues, arthritis, diabetes, libido)? These often manifest before liver problems. Second, more reassuring re your family. Tests for GH are easy - an initial blood test to see if there is a raised ferritin level, followed by a genetic test to see if there is any genetic evidence. If GH is identified, treatment is easy - blood letting until ferritin levels return to normal. All of my family were tested post diagnosis and I was the only one, although I have suspicions about my great grandfather who I have only been told about!
There is also quite a lively west midlands group who you contact via westmidlands@haemochromatosis.org.uk
best wishes
Mike
in reply to
Thanks Mike. Previous symptoms? Yes I had bronzing, and fatigue which I put down to just getting older. I used to get light headed and irritable before a meal, so diabetes? Maybe, I don't know.
My GP was pretty much useless and diagnosed my vomiting dark blood as gastro enteritis (a few days prior to my GI bleed). Early days yet so I doubt if they'll investigate further till the 3 months are up.
I've been feeling a Lot better the past two days, my lovely wife decided that I was just feeling sorry for myself and bullied me in doing a bit more excersise and dragged me round the block. Well it actually worked! My fatigue, fogginess and sickness have gone although still have issues with the diabetes thing. Back in Birmingham QE clinic on monday.
Has anyone told you what to expect at the assessment? I found the first day with all the tests ok (tiring though), the second day, I found awful, as we (about 7 patients with families) were in the waiting area. I got in to see the surgeons etc quite quickly and was really happy to be told that they would all recommend that I be listed. However, a one of us returned from the surgeons in absolute horror after being told that he was just too poorly to be listed. That was so hard for everyone. They called the poor guy back in though and told him that they would try a different procedure instead, Happy days. I don't think we would be assessed if they weren't considering us.
Good luck with your son Grumps, please keep us informed.
A name, yes I know that would be a great idea but without knowing my donors name, I don't feel it would be quite right. I know some call it 'Robin', apparently the bird has some significance and unfortunately NHS Organ Donation have been promoting a tatoo over the scar, risky (I have given them feedback on that). At the moment though I just call it/her 'Guardian Angel).
I suppose we all think of the donor organ differently (depending on our upbringing and religious beliefs etc).
I don't really believe that my donor has lost her life, her personality/mind/spirit/soul may have departed but her body (or part of it) is very much alive and well and living inside of me and maybe others. Our spirit is really only a part of this existence that we call life after all.
She has lost her life in as much as she is no longer the 'entity' she used to be but on the other hand she IS living on in yourself and that too is very likely of great comfort to the donor family if they know.
QE told me at my assessment (I haven't been transplanted yet) that often the kidneys can play up for a while after transplant but they usually settle down in six months or so.. Hope you feel better soon
I have had it but I don't now. I was treated for it. They remove pints of blood until the iron level is ok. It can take months and some people even live with it. Everyone will adjust to the news if it turns out you have it. No one in my family has it. mine may have been caused from my liver disease. I felt better everytime they took a pint. I honestly did.
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