Liver transplant - Let's support each other

I’ve always firmly believed in the importance of learning how to, and practicing, eating well, exercising, and using natural herbs/supplements to remain as healthy as possible. This worked well until I turned 60 and was shortly thereafter diagnosed with PBC/liver cirrhosis. Then my research became focused on my disease and learning natural ways to supplement ursodial to help keep my liver functioning. So, since my transplant a whole new realm of research is required! Including, of course, drug interactions and side effects management, and how to avoid getting diabetes, hypertension, osteoporosis, and other diseases common post transplant. I do believe it’s vital that I try my best to be healthy and to know the best path to achieve this. Plus, for me anyway, gaining knowledge keeps me from being depressed and keeps my mind active and away from focusing on current health issues, Covid, not finding employment, etc.

@athenalee If you are on prednisone then you do need to be conscious of the possibility of getting osteoporosis. I have it now from having to take prednisone. I'm not sure, but I don't think the other immunosuppressants are a cause of osteoporosis. It is amazing though how many things can be caused by them. I now also have hypertension, sometimes, and high cholesterol which I believe is another side-effect of immunosuppressants.
JK

Hello and thank you. Fortunately not on prednisone...allergic. But, I’ve read that Tacrolimus and other calcineurin inhibitors are linked to osteoporosis, but how seems to be a question. I offer the attached article for the group, as I found it one of the best on post transplant complications.

This was very helpful

Thanks

@jackie421blfdgurl, I am in Kentucky and my transplant Center in in Minnesota (750 miles). I can understand how the distance and travel planning can complicate things. I rely on my local primary care doctor who is willing to work in cooperation with my Transplant team at Mayo in MN.
Like you, I found myself at home and alone in a world on non-transplant family and friends. I find great comfort and companionship in the interaction with others who are like me on Connect. I enjoy learning from each other and supporting each other. I hope that you will feel the same.
I am sharing a link to some immunosuppressant medicine and side effects for you to look at. It is going to be your doctors who regulate and advise you about your meds.
Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
When is your MRI? Is it local? or do you need to travel to the transplant center?
What is the status of your swelling and pain?

What an excellent article @athenalee I am realizing more and more that there are many problems associated with immunosuppressants. That article is somewhat disconcerting but I would rather know what I am dealing with than be ignorant of it, particularly when I have a number of these side-effects -- hypertension, osteoporosis, hyperlipidemia -- but until recently I had no idea that my immunosuppressants caused them. I developed diabetes prior to knowing that I had liver problems (NASH) and interestingly, now it seems to be in remission. My numbers are always very good.

Thank you for sharing that article.
JK

What really struck me about the article is that I wasn’t told about these potential diseases that are so prevalent post transplant. My transplant team is awesome, and our nutritionist informative. But I think it’s a disservice to have not been fully transparent. I’ve never had high blood pressure, high lipid counts, or high glucose until post transplant. I’m now being even more diligent on healthy eating and exercise so my labs are improving. I’m glad your diabetes is in remission!

You and this site is a god send to me. I was not aware of the problem with bone disease.
I have read a lot of info on my transplant and have researched all my 16 pills, especially
Since I had all those side effects. I am down to 6 pills.I had a CT scan on Friday so
Hopefully I will b able to connect with my doctor. We had 2feet of snow here in Jersey Sunday night till Tuesday am,(today)so I am hoping staff made it in. Thanks so much to all members I feel I would still b lost without this communication, even though my liver t/p
Team is good but they r doing a job they were trained for where we went thru the process.

@athenalee, @tgm512500, @sue6175, @jackie421blfdgurl, @contentandwell, and anyone who is interested

I have located a discussion where the topic of immunosuppressant medications can reach All of our transplant members (not limited to, liver patients at this current discussion title suggests).
It begins:
Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/
@athenalee, Would you like to share your article there?

Thanks, @rosemarya For directing us to a more inclusive conversation about immunosuppressants. I just checked it out and see that I had contributed to that back in 2020. I plan to go back and review it again later. I seem to learn new side-effects of immunosuppressants frequently. Mine are not the type of side-effects that affect me in an obvious way, they are the quiet but serious side-effects like BP, cholesterol, and osteoporosis.
JK