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Transplant anti-rejection medications. What's your advice?

Transplants | Last Active: Dec 21, 2024 | Replies (377)
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@scottij

My experience is not long term; I am only eight months out from my heart transplant. Still my only side effect has been indirect from tacrolimus which leeches key electrolytes from the body. So we adjust my tac balance with regularity and use a few supplements such as magnesium to balance my electrolytes. I have never been a sleeper as I was averaging abut 3.5 hours a night prior to surgery and I am up to a whopping five hours now. My philosophy of dealing with side effects is to note that I am alive to bitch about it.

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Replies to "My experience is not long term; I am only eight months out from my heart transplant...."
Rosemary, Volunteer Mentor | @rosemarya | Sep 7, 2020

Good morning, @scottij. Congratulations on your new heart transplant!
On Connect, we value and we welcome all transplant experiences. At 8 months you are already an 'expert by experience' and by sharing with others, we can support others from the patients' perspective. I got a liver and kidney transplant in 2009, at Mayo Rochester. I had a difficult pre-transplant journey with a fantastic recovery. I came to Connect when I wanted to meet other transplant recipients.

I appreciate, (but have used different language) and I agree that some side effects are tolerable when considering the benefit. I felt more discomfort/side effects during my early post transplant period, however as time passes, and I have reached a stable dosage level and my side affects are a non-issue for me. My Mayo team keeps close watch on potential internal side effects. It looks like your team is on top of your body's reaction, and are being proactive in making adjustments that are going to benefit you.

Scottj, As a mentor, and fellow recipient, I invite you to scroll thru the many discussions in the transplant group. Know that as a member, you are welcome anywhere, any time to lend a word of support to someone, ask a question, or simply drop in and say 'hi'. Here are two to get you started and where you can meet som other members(@glinda, @danab, @dennisprater, @estrada53, @chugly11) who have also received heart transplants.
https://connect.mayoclinic.org/discussion/heart-transplant-231a15/
https://connect.mayoclinic.org/discussion/heart-transplant-recovery/

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Dana, Volunteer Mentor | @danab | Sep 7, 2020

@scottij Hi and Welcome to connect. Congratulations on your Heart Transplant. Sounds like things are going well. I too am a Heart Transplant receipiant and I also live in Arizona. We have a few things in common we both got our hearts rather quickly mine was 5 days and it put me into early retirement. My transplant was in Jan 2018 and i had a few bumps in the road but not Heart associated. I seem to get virus rather easily but we got that under control now. I would guess you had your transplant at Mayo Phoenix? So its great to have another Heart Transplant patient there are not as many of use here on connect as with other organs.
Have a Blessed Day
Dana

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