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@rgb3547
A few comments, corrections and a question:
2. Cyclosporine is great for growing hair and many other things:)
3. That was the new transplant team that took over..
A question I forgot to ask you:
Do you still take an steroids?
When I received my transplant in 1993, they said we’d be on steroids for life 😳. However, I found out they took children off of them asap after surgery. I starting talking to the docs about getting off. Finally, they weaned me off, but the years of steroids have badly affected me. I’m hoping you’re off or they don’t keep you on them for long now!!
Best wishes!
Elaine
Replies to "@rgb3547 A few comments, corrections and a question: 2. Cyclosporine is great for growing hair and..."
@ehs6855, I'm sending a belated Welcome to Connect. I have been following this conversation, and I am inspired and encouraged by reading that you are a 30 year recipient. I will celebrate 14 years in April, and I am so-o-o happy to meet you here. I joined Connect a few yeas after my transplant, because I was looking for someone who had experience with life as a transplant recipient. I would have loved chatting with you back then, and I will look forward to hearing more of our experiences in the future. 🤍
If you are comfortable to answer, I have a few questions: Where did you receive your transplant? How long were you in the hospital after your surgery? Do you still have annual post transplant follow-ups by your transplant team?
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Thanks a lot for taking so much of your time to answer my questions.
For me your 30 years are way too much to ask from God. I can see him saying " oh ... you are just one little naughty boy, come on now be sensible!!". I am just happy to know that there are living people like you who beat the odds by a long shot & are living a reasonably healthy & happy life.
I am currently on 10 mg of Tacrolimus/day, 1000 mg of Cellcept & 5 mg of Prednisone/day. I had my liver enzymes quite elevated through the first 9 months after my LT & I think that could be the reason for the relatively higher dosages. About the steroids, I began with 20 mg/day right after discharge & that was discontinued after 3 months. My hepatologist restarted it (may be suspecting a slow rejection) around the 6th month starting with 10 mg/day. Now I am on 5. I had 2 liver biopsies & an MRI & all three came back with no significant abnormalities. Two of the enzymes (ALT & AST) have come down since but the other two (ALP & GGT) are still on the high side. I feel more or less normal. I can say that I am 65-70% back compared to my healthier days. I have good days & a few not so good ones. Everyday, I thank God for his mercy, for literally plucking me out of the grave. I walk 2-3 miles - three, four days a week. I used to walk 6 days a week but that just overwhelmed me. I think my body was telling me that I needed a recovery time from the previous day's walk.
Thanks again,