Newly (liver) transplanted…

Hi @ehs6855 Elaine, @rgb3547 is correct. Your response unfortunately did not go through. I believe it didn't post because you tried to reply via email. Please click VIEW & REPLY in the email notification and post to the website. Would you mind posting it again?

@rgb3547, no babies or bath water were thrown out. 🙂

Thanks, & my apologies.

@rgb3547
I apologize that my first attempt to answer you didn’t go through.
In answer to your questions:
1. I am still on 1 mg tacrolimus per day.. I’ve asked the doctor to take me off totally, however he wants to do a liver biopsy every six months if I go off of it totally. I won’t do that because I’m on blood thinners. So, I guess I’ll be on them for life..
2. I had a slight episode of rejection after six years. I was on a drug named Cyclosporine. The doctors said that was probably the cause so they put me on tacrolimus and I’ve been good ever since🙏🏻
3. I was doing labs once a year until the old transplant team took over. They changed my labs to every 6 months and I’m still doing labs every six months at my internist office.
I have only gone through two teams of transplant doctors but numerous coordinators. ( I totally understand! Being a coordinator is a hard job with long hours and they’re overworked horribly)

Congratulations on your first year🎉 That’s a big accomplishment! It’s hard work staying well and keeping up with all of the meds etc. Do you feel more like your old self before you got sick? I did, it was a major milestone for me:) I try not to take life for granted. It’s still one day at a time for me and I thank God for every day that I’m alive and well🙏🏻🙏🏻🙏🏻

Take care of yourself and try to walk daily, it really helps to keep moving. Stay in touch…. Elaine

@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

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,

Punkin27 yes I agree with your post. Most of all congratulations on 30 years u made my day. I am2.5 LTP w/one episode of rejection. Taking a lot more immunosuppressive meds YUK and off prednisone. Yay.
I wish u nothing but continued health.😊💚
I will be looking out for your post that rgb3546 sent u.
I am very interested how things will be after 30 years..

Pumpkin, you r so inspiring with your view on life after TP, thank you so much for sharing your LTP journey.
I to am living my best life to after TP, I thank my donor family each and every day for my second chance at life😊💚🌻 I guess I will have to realize I will be on tacro for life but I cannot wait for the decrease in meds. Also I wanted to ask have u had any kidney issues. Thanks

@rgb3547
I replied to you the correct way yesterday and hope you received my reply this time 😊
If not, please let me know!

Yes, I had received & read your response. In case you missed my response to your questions it is the 6th post here, counting downwards from the very top. Thank you very much. I found your answers (along with your initial post) to be very useful in resetting for the better the rather modest & humble expectations I had about the future. It is my assumption that many here also may find your post to be what they really needed to boost their moale & feel once more very hopeful about the future. It is surreal that we are talking here not in terms of months or years but decades!!! Trust me that you are our community's "celebrity". We know that it is virtually an overreach for not so few of us to replicate your achievement, granted that our years here on earth are gifts from our God & are only according to His will.
There also arose a few more questions in my mind (to you). I hope I am not taking too much of your time & pestering you with all these questions. Please bear with me.

a. How soon after your transplant did you go back to work? Are you still working? If not, for how many years did you work full time post transplant?
b. After your surgery (in the pre-Covid days) did you have to wear masks ? Are you wearing masks today?
c. Have you ever had a really serious infection? I know minor infections are not rare in the transplant community.
d. In the earlier days, how intensely did having a liver transplant affect your social life?
e. At what stage or around what time did you reckon that you are going to have a long, steady & relatively healthy life & start preparing yourself for the journey?
f. If you are asked to give one, single advice to transplanted individuals as the MOST IMPORTANT for longevity, what would it be?
g. Now the tough one ... Please feel free to ignore/skip this question if you do think that it is too sensitive for you.
How many LT survivors are there today (of those you know in person) from your initial days (i.e the early 1990s & later) ? Do you still communicate among yourselves, at least touch base on anniversary days?
Thanks a lot.

@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?