Hi Jamie. If I may dare say, the first year after a SCT is a challenge in many respects. I joked with my doctor about how this isn’t for sissies and anyone going through this needs to keep a sense of humor, have a sense of adventure and be flexible/resilient! Right?
Mark has had his share of side effects. I’m happy to hear his gut gvhd has subsided. That will go a long way in helping him get his strength back, having a return to a normal gut biome.
There was a period where I felt rather frail. I didn’t fall but my balance was way out of whack. My doctor suggested some PT sessions and that made a huge difference for me. I learned some critical core strengthening exercises. I wonder if maybe Mark might benefit from that? If he doesn’t want to go to PT there are videos on Youtube that would be another option. Just go slowly and gently.

Water…that really is a key in keeping those meds flushed through his system. I struggled too, initially, with drinking enough water. What really helped me is to drink room temp water, no ice. It went down much easier and is more readily utilized in the body. I still have a Brita pitcher on the kitchen counter during the day. That way I keep track of how many glasses I have by the refills. I try to drink a cup at a time, at least 8 times daily. But actually have more than that. What do you feel is Marks obstacle in not getting enough water?

I was on all my meds for 2.5 years. Until we transplant patients are off the tacro, we still need that temporary immune system provided by the medications. I wasn’t able to wean completely off tacro for a long time because my new immune system was aggressive. However, the tacro, even at the small doses can be hard on the kidneys. My doctor was cautious but not overly concerned about my kidneys at the time. He’d told me that tacro can constrict the blood flow through the kidneys so we were watching the numbers. After stopping the tacrolimus, my kidney numbers have returned to normal with a good GFR. Water is important to keep things flushing though so I hope Mark can slowly increase his consumption.

One other thing that I might toss out to you. I really benefited from seeing a licensed massage therapist. It was the final step in getting my body back to feeling normal again. The toxins were finally released from my tissue. And interestingly, from that point on, my monthly blood numbers improved! Plus it just feels amazing ☺️ You and Mark could both use a chance to relax…and it might help with his migraines.

Let me know how his neurology appt goes, ok? Have a lovely Thanksgiving. Lori.