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Gut problems after heart transplant
Transplants | Last Active: Jan 31, 2022 | Replies (15)Comment receiving replies
Like you @saundrella, I had many questions (and still have!) about the effect our immunosuppressant meds have on our bodies. But, as I was very close to dying and then was blessed to receive my new awesome liver, I’ll do anything my transplant team says to do in order to keep him happy and healthy.
Shortly after my release from the hospital, I was having sinus pain. I took a homeopathic I’d taken pre-transplant for sinus issues. I had my labs the following week, and my enzymes had shot way up. Lesson learned.
I now understand the metabolism of our drugs and the reason why so many other medications, along with many natural/herbal based remedies, interfere with our medications. Including taking probiotic supplements, as we can develop an overgrowth of good bacteria in our gut biome, which isn’t good.
Since we need our meds to live, the best way to keep a healthy gut biome and body is to eat well; limit unrefined sugars, white flour, and other simple carbohydrates; limit processed food; watch one’s salt; exercise; monitor one’s blood labs; and, always do what your transplant team says!
And, to echo Lori, keep asking questions and discussing here on Connect and with your team. As patients we’ve been through what you’re going through and your team certainly knows what you need to to get you through your surgery and post transplant!
Replies to "Like you @saundrella, I had many questions (and still have!) about the effect our immunosuppressant meds..."
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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.