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

@scottij, No apology needed! Your language said what you meant perfectly, You did not offend me.

Rosemary,
Thanks for reaching out and I apologize if my rough language may have offended you. I grew up with a father who made profanity sound like poetry. Perhaps I should have said I was alive to "complain about it". I actually I am surprised at some of the topics raised by people in this forum. I just want to tell them to bring this topic up with your care team and doctors rather than enjoining amateurs like me. Though I do appreciate your designation of me as an expert by experience. I am certainly not one by education and training.

I will ping your references and offer my gratitude ahead of any results.
Best always,
s!
Scott Jensen

Dana, Thank you for reaching out. Indeed I had my transplant at Mayo Phoenix about 8 months after after failed valve surgery in Tucson. I agree the forum is dominated by the liver/kidney mafia (lol). That may make sense given the number of those surgeries vs ours. I have had a few Covid-19 scares that were just viral infections but otherwise I have been very healthy. Frankly I was hesitant to join the forum as I am not particularly good with whining. It just wasn't allowed in our household growing up. I only recently joined the Wednesday zoom calls led by the heart social workers and am learning to be more patient with others. That said, no whining probably brought me to the transplant as I apparently ignored at least two major heart attacks as indicated in the pathology on the old heart.

Time will tell if I stay on either forum. But then, I have a lot of time on my hands now so...
Best always,
s!
Scott Jensen

@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

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/

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.

Shortly after my kidney transplant in 1981 Cyclosporine was just starting to be used. I am on still on 5mg of prednisone and 125mg of immuran. I know the side affects of both drugs but 39 extra years of life and hoping for many morr out weighs there side affects.

Also stay healthy and eat right. Exercise very important

I can only speak about my LIVER TX.-2010.. These rejection meds are very powerfull! What I did was I constantly hounded my transplant dr to get me off Cyclpsorine as is it was ruining my kidneys among many skin cancers . Depending on how long your post transplant and how good a match you were I would talk to my transplant team and ask them to start to slowly ween off these meds to a level where you dont reject but your not gonna ruin the rest of your body or get cancer. Right now after 10 yrs Im only on cellcept 500mg-day 250mg-nite. For those of you who take Statins --these meds like cyclosporine interact with statins and cause renal problems.That was another reason they finally bowed their heads and took me off cyclosporine. Remember most Drs only go by PROTOCOL!!

@jodeej I worry too because they are in your system for a long time, but Reclast seems to be the medication of choice. I want to speak to my endocrinologist about Tymlos because that builds bones, vs the others that just maintain. Your gains were probably from the other things you are doing along with the medications. Being on prednisone is what has caused my osteoporosis probably. That's what my endocrinologist felt.
JK