Gut problems after heart transplant

Hi @fredrikwallinder, welcome. You'll see that I added your discussion to the Transplants group (https://connect.mayoclinic.org/group/transplants/) as well as the Digestive Health group. I did this to more easily connect you with fellow heart transplant recipients like @danab @estrada53 @bellini @dennisprater @scottij @amynewheart @mlee1969 @glinda and others.

Fredrik, I assume you are seeing a GI specialist to help resolve this issue. Have you spoken with a knowledgeable dietician? Have any dietary changes been suggested to help?

Hi Fredrik, Welcome to Connect. I'm Dana and had a Heart Transplant myself in 2018. I did go thry an issue about a year and a half after mine and was diagnosed with an inflammation in my small intenstin and also cdif. So after due to the cdif and being on antibiotics my doctor recommended lactobacillus Acidophilus to help balance my gut health. As I was told typically when we are on antibiotics it had a tendency to kill the good bacteria we all need in our gut and intestines. Thus leaving the bad bacteria to grew and cause problems (the good bacteria keeps the bad bacteria in check) so that supplement helps regrow the good bacteria and balance things out. But as your probally aware as I know my team is they want to know everything we are taking so I suggest discussing it with your Transplant team. Let me know what they say as I actually got this info from my pcp not the cardiologist. So glad you happened by as we Heart Transplant folks are a bit of a minority here .

Hi Fredrick. I, like Dana, have received a heart transplant. I am 5 years our on Jan 7. My stomach issues revolved around acid reflux from my meds. Very uncomfortable and difficult to sleep. My pulmonologist offered to prescribe Erythromycin for motility to help with moving food through all areas of the stomach. I went off of Omeprazole and no more Tums or other antacids. The dosage is at 250 mg and will not affect us in the long run(fingers crossed here). It did affect the metabolization of my Sirolimus, one of my ani-rejection meds so we played around with that for a few months to negotiate the interaction. All is well there now.
Welcome to Connect and if you other questions, please reach out.

I had a kidney transplant. The first year I had the same issues and came across a post about changing when to take meds. I started not eating one hour before meds and eating nothing two hours after taking meds. It’s really inconvenient but it has worked really well. I no longer have stomach issue.

Antibiotics destroy good bacteria as well as bad bacteria in the gut; this is already a well-known, established fact. I've also read that various pharmaceuticals destroy good bacteria in the gut and can create a "leaky gut" which creates a host of problems. What I am thinking about is the comorbidities created by the immunosuppressant drugs that kill off good bacteria. Since our gut is responsible for 70% of our immunity, the whole idea of immunosuppressive drugs is to lower immunity by killing off good bacteria to prevent graft failure. Do I have this much correct?

Another thing I wonder about: Does the taking of immunosuppressant drugs pose as much risk to one's health as the possibility of a graft failure by not taking them? it seems to me that it's the comorbidities brought on by the long-term use of the drugs that get us in the end.

And, how is it possible to take probiotics to increase the number of good bacteria in the gut when the goal of the immunosuppressant drugs is to lower the number of good bacteria, thus lowering our immunity? It seems to me transplant patients are at risk from graft failure by not taking the drugs and at risk of comorbidities by taking them. It would appear, once one is able to get their immunosuppressant drug dosage lowered after a few years, one's chance of living longer increases.

Having not experienced transplant, yet, I obviously don't know what I am talking about but I am in the process of being evaluated so have lots of questions. Can anyone help me understand why some people do better than others post-transplant? Is it because they have fewer health issues prior to transplant or is it a matter of taking better care of one's self post-transplant? I would think everyone tries very hard to do all the right things and yet, from what I have read, only 50% of liver transplants will survive twenty years. The first few years seem to be the riskiest. Is this due to the side effects of the initial high dosage of immunosuppressant drugs? Is there anything one can do to resist the side effects of these drugs in the short term as well as over the long term? Or is it that we are all simply subject to the "fickle finger of fate"? I'm full of questions, right now. I hope to get many of them answered during the evaluation process but appreciate all input. It is good to read about what has helped different people deal with the various side effects.

Good morning! You’re asking a lot of really great questions this morning. I hope I can shed some light on a few of the topics.

First, you’re absolutely right that antibiotics are not discriminatory and will also kill off any good bacteria in our guts. That’s why it’s crucial to take a probiotic a few hours between the doses of antibiotics to restore the normal flora in our guts. It is possible to take antibiotics long term without serious side effects if we keep a good balance of good/bad bacteria.
After 2.5 years on 2 antibiotics I’ve finally been able to stop them. Not once did I have any side gut issues from taking them. I kept up a daily regime of yogurt with live bacteria mixed with ground flax. Kept things healthy and active. So it is doable.

I’d like to help you in the understanding of Immuno-suppressant drugs in relation to a transplant. I did not have a solid organ transplant but needed a bone marrow transplant. (A new immune system) They are similar in some regards because of the medications involved but totally different when it comes to graft vs host issues.
But basically, immuno-suppressants for a transplant patient need to be thought of as Anti-Rejection drugs. They do not and will not cause bacteria in your intestines to die off. They do NOT lower gut bacteria. They are not antibiotics.

They are drugs meant to slow down the reaction/response time in the body’s natural defense system anytime sometime foreign is introduced to the body or in cases when there is an inflammatory disease that needs to have the immune system suppressed to halt the body’s attack on itself.
These are not bacterial cells in the gut. These would be the innate and acquired immune cells of the body found in the immune system.

So, in your case, with an upcoming Liver transplant, at the time of delivery, you will start on an anti-rejection drug. This is to keep your body’s defense system suppressed so that when it recognizes the new liver as a foreign invader, it can’t launch an all out attack on your new liver, thereby rejecting it. You will be on some form of anti-rejection drug for the rest of your life. Your liver is a vital organ and so, that takes precedence over NOT wanting to take the drug. In this case, the immunosuppressant, quite bluntly, is absolutely necessary. No drug, no liver, no life…
Life holds no guarantee and sometimes drugs buy us time!

However, with your being on the immuno-suppressant AKA, anti-rejection med, your entire immune system will not be as robust. That means you’ll be more prone to illness if you let your guard down. If you eat well with the precautions for food prep you’ll learn about prior to transplant, participate in daily exercise like walking, take your meds and use every measure available to avoid Covid by wearing a masks, staying out of crowds, etc. you’re going to be great! I am immuno-compromised and nothing stops me from enjoying the things I love. I’m just super cautious with masking and that means even with friends and family. Every day is a gift with my second chance at life and I refuse to waste a minute worrying.

Quite a few of our members and friends here on Connect have had Livers, hearts, kidneys, and offer a lot of really helpful information. I know you’ve already had conversions with @rosemarya, @athenalee and others. So I hope that with all of us behind you that you’ll start feeling comfortable with taking the immunosuppressants when it’s time.

To answer the questions in the last paragraph, yes, there is always a risk with a transplant. But without it, what life will you have? With a transplant you have the opportunity to have another chance at life. Yes, preexisting conditions can play a factor in how the patient recovers and also the match of the donated organ with the proteins having to be closely related. But that is helped along by the anti-rejection drugs. At transplant when it’s most critical, the drug levels will be higher but will gradually be tapered to a maintenance level. No one likes to take them but it can be a matter of the difference between a happy, healthy, sustainable life and passing away.

Have I helped answer some of your questions? Have any more? 😊

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!

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.

Hi @saundrella I read your post and along with Lori's response I thought I would add that I just happen to be experiencing a touch of Shingles myself right now and have never had them but I'm so happy I did get the vaccine a few years ago as it's been very mild , no pain and very light itching just for a day or so. I watched my Wife have full b lown Shingles and know first hand how miserable they can be. So I would say yes to the vaccine. Also I had a post earlier in this discussion about gut health you may want to check out. I was put on a supplement by my Doctor to help when I was having gut issues after having cdif and the antibiotics i was taken then. I am also a transplant patient mine was a Heart and I agree with Lori about immusupprest drugs as I've been on them now 4 years. The gut issues were about 2 years ago and Thank Gid have not reappeared. If I can help also please ask away. So your being evaluated for transplant. That awesome good luck .
Blessings