Gut problems after heart transplant

Hi Dana,
Thank you, I will definitely check out your earlier post about gut issues. Good to hear the shingles vaccine protected you so you had only minor symptoms after lowering your immunity through the anti-rejection drug protocol! I had been contemplating getting the shingles vaccine (right after I got the Covid vaccine) because I had chickenpox when I was young and knew I was at risk, now, for shingles. Before I had a chance to get the shingles vaccine, I came down with shingles. Not fun!! Don't wish to go through an attack like that again. It sounds to me like the shingles vaccine will do for me what the Covid vaccine and boosters do. If I get Covid, it will be a milder case; if I get shingles, it will be a milder case, too. That is comforting to know!!
I do feel blessed but have not completed the process of evaluation, yet. After I finish, my daughter needs to go through the same evaluation and we'll have to learn the results before any celebrating!
Thank you for offering whatever help you can...and for your blessings :o)
Saundra

Hi Lori,

Thank you ever so much for your detailed response. The best thing I learned is that immunosuppressive drugs do not kill off good bacteria; they are NOT antibiotics. Good to know! I need to read more about the other points you made. I can tell you this. I have been taking very good care of myself for a long time. I know good nutrition, do the treadmill for 45 minutes every day, and my family is very careful about Covid, masking up with an N 95, etc!

My mother was taking steroid (?) injections for shoulder pain before she died at the ripe ol' age of 99. She had been told her bones were like ice cream cones. The doctor who injected her was truthful enough to tell her the injections would help her pain, at first, but the effect wouldn't last and the pain would be worse in the end as a result of taking the injection. This proved to be true but she was in so much pain at the time she was willing to do anything for even short-term relief.

I inherited osteoarthritis but have been able to control it with diet, exercise, and thyroid dosage. One question would be: Can one protect one's bones through diet, cardio, and weight-bearing exercise after going on immunosuppressive drugs, or is one automatically prescribed (bone) drugs?

Also, I recently had shingles. The shingles virus lays dormant in one's spine and once triggered through stress, emerges to affect one side of the body's nervous system. I was given antivirals and my symptoms cleared up within a couple of weeks. But, the shingles virus is always going to be in my body. If my immunity is always going to be down due to the immunosuppressant drugs, isn't the shingles virus going to be continually triggered due to my lowered immunity? Or will taking a shingles vaccine prior to transplant avoid that? I wonder if the shingles virus rears its ugly head due to lowered immunity, and I am given another antiviral, it may help for a while but, before long, my lowered immunity will put me back where I started. Having shingles is nasty. I'm sure the doctors will be able to answer this question for me but it would be interesting to know if anyone else has had to deal with this problem.

You provided so much good information - I need to go over it again. It's good to know immunosuppressive drugs do NOT destroy the good bacteria in our gut, but I'm still not clear on the process which does cause the gut issues and associated comorbidities. Is it that they were already there prior to transplant and the immunosuppressive drugs made them worse, or are the immunosuppressive drugs responsible for creating them?

Are you able to recommend any research or medical article on this subject? Suggesting some keywords to do a search on would be helpful too. Which medical sites do you recommend?

Thank you so much for your input. It helped a lot.

Thank you, Athenalee. Yes, I certainly intend to cooperate when it comes to taking immunosuppression drugs after transplant. I do not question the importance of them just want to understand the ramifications of taking them better. It's good to hear from someone who has been through it all.

I do very much appreciate your input. Having the freedom to ask questions and get answers is a good thing. Otherwise, I spin around in my own head and that's not helpful :o) as I'm one of those with a need to know.

Twenty years ago, my local hepatologist did a liver biopsy on me. I was diagnosed with mild portal hypertension at that time but my condition wasn't explained adequately to me. Then I was sent to Mayo and I saw a wonderful doctor, there, who really cared and took the time to write up a list of what he thought should be done for me. Since I am AMA negative, one of the things he suggested was to put me on a trial of Urso, and if I responded to it, that would prove I had PBC. The local doctor I was seeing just happened to leave his practice at this time and I was placed with a new local doctor. She had to see the letter of recommendation in my file from the doctor at Mayo but she never bothered to do anything that was recommended. Ten years later, I was feeling congestion in my liver and asked her if I shouldn't be going to Mayo for another biopsy, and would she give me a referral to do so? Her response: "No" I reiterated, "You won't give me a referral?!!" Her response: "No. Even if I did, it wouldn't make a difference anyway."

I decided to go without her recommendation and, while the doctor who had written the letter of recommendation had since left Mayo, another Mayo doctor put me on Urso and all my liver labs returned to normal! For ten years my local hepatologist allowed my liver to burn!! I wondered where I would be if I had gotten on Urso earlier. I trusted my local doctor to do right by me and all she ever did was do labs which were always elevated and she would write a note to me, "Labs stable." So I assumed all was fine because she never explained anything to me and I never asked, just trusted. I know since going to Mayo, my liver lab results were not fine and remained high for ten years until I was put on Urso.

So, even though I have come to accept what happened, I did develop this need to know, probably more than your average person, I dunno :o) It probably will never leave me after being stung like I was. I know I can trust my Mayo doctors and the transplant team but I still have this need to know. It's a healthy need, I believe, even if I have a propensity to take it too far. Knowing more is better than knowing nothing, I figure. :o)

Thank you all for being a source of knowledge and encouragement.