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

@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/

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

Hi Scott, It's Ellen from our Wednesday zoom meetings! I knew it was you immediately. Please feel free to reach out and stay in touch even though we are on opposite sides of Tucson. Look forward to seeing everyone on Wednesday. I missed last week. Lots of work in my classes. Take care. Ellen

Hi Scott, It's Ellen from our Wednesday zoom meetings! I knew it was you immediately. Please feel free to reach out and stay in touch even though we are on opposite sides of Tucson. Look forward to seeing everyone on Wednesday. I missed last week. Lots of work in my classes. Take care. Ellen

Hello! This is my first time posting in this group and I was wondering if anyone else has had consistent diarrhea with taking Sirolimus?
Here is a little background: I am 11 years out from my heart transplant and have been cruising along, living and loving life ever since. For most of my transplant experience I took 2mg x2 daily of Tacrolimus and 180mg x2 daily of Myfortic. That seemed to work pretty well and I did not have any noticeable side effects. Recently my transplant team told me that my Creatinine levels were reaching a level that wasn't good for my kidneys. So they recently switched me to Sirolimus, originally starting me on 1mg and then to 2mg with the goal to get me off of the Tacrolimus. However, this switch has caused daily and repeated diarrhea and abdominal cramping/ pain. I limited my diet and stopped consuming dairy, coffee and soda. And since it hasn't gotten any better, I am really only eating items according along the lines of the BRAT or low fiber diet.

I am reaching out to this group to see if anyone else has had a similar experience? And if you did, how did you handle it? Are you taking an anti-diarrhea medications? Did you ask for a medication change? (I'm hoping that is not just my goofy DNA that is causing me to have these symptoms.) Thanks!

@tbrigham, I want to welcome you to the transplant discussion group. I would also like to congratulate you on 11 years with your heart transplant, 11 years is special to me because I am 11 years out from liver and kidney transplant.
I don't take Sirolimus but I did read that diarrhea is a side effect with Sirolimus. Here is the Mayo Newsfeed Article: Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
tbrigham, How recently were you switched to Sirolimus? What has your doctor had to say about about a possible remedy?

I want to bring @contentandwell to this discussion. She has shared a similar experience.

Thanks @rosemarya. I appreciate your kindness. Hurray for 11 years!
I started with a 1mg dosing of Sirolimus on Oct 5, 2020 and then they increased it to 2mg on Oct 30, 2020. After I spoke to my transplant team earlier this week, they agreed to let me go back to the 1mg dosing but had to go back 1mg x2 daily of Tacrolimus (Prograf). I am waiting to see if that helps! I did read through all of the side effects before starting the medication, but we all know that medications affect people differently.
Thank you also for connecting me with someone else who had a similar experience!