@tbrigham
Hello Tara and welcome to active posting. I am very sorry for your series of bad side effects yet congratulate you on 11 years. I have been with my new heart which I have named, Dave, for 11 months now. Two thoughts have sustained me through my much more minor medication issues. First, at least I am alive so that I can complain about whatever it is that is troubling me. Second, and this came from Lisa Trost, one of the heart transplant team social workers, we traded in a large problem (you know what we are talking about) for a series of much smaller problems (you know what those are for you).

Through this first year my medication regimen has shifted ever so slightly. Most changes were to tacrolimus and that has gone up and down from 10 mg per day to 7.5 now. For a long time we just could not get the right levels and when I was running high I had very bad cramps in my hands, feet, and ankles (of all places!). I also take magnesium supplements to counter act those cramps. Throughout those changes all sides were watching my creatinine levels and BUN (blood urea nitrogen) numbers like hawks due to the stress that "tac" places on the kidneys and liver.

We recently reduced my mycophenolate as my white blood cell count was too low.and that has not created any issues.

The worst side effect for me is that the immuno-suppressant drugs have completed the job I started of wearing away any cartilage in my hips so I have a lot of pain at night. But again, I am live to complain about it.

If you are considering any OTC anti-diarrhea aids please consult with your team. I recall that some of them affect the absorption of your meds. They might be okay if you can correctly manage the timing of each. Still, challenge your care team.

Feel free to ping me if you are so moved.
Best always,
s!
Scott Jensen