About a month ago (boy, how time flies…) Sarah had her very last appointment with her beloved transplant team at Primary Children’s Hospital. I can’t believe we’re at the point of closing that chapter of our lives and moving on. It’s been in the works for a long time now, but it’s still hard to let go. Lots of newness coming our way!
Sarah’s annual heart cath and biopsy went amazingly well. Having not had one for so long, she was out of practice and a little nervous. She had told the nurses that she wanted some versed (we call it happy medicine) to help her relax before they took her in. By the time the anesthesiologist came to talk to us, though, she had decided she was fine and didn’t want it after all. There is something amazing that happens as your medically-experienced child grows up. It’s incredible to see how she’s learned to cope with and now let go of the anxiety of these procedures. It was fun to watch her walk in and greet everybody like she owns the place and joke with them about the doctor’s bad taste in music. She did so great, and whatever they gave her to help her sleep during the procedure was a magic cocktail. She woke up feeling good, alert, happy, and totally nausea-free. That made her recovery so much easier. Her heart pressures were nice and low, coronary arteries wide open and beautiful, stent stable and strong, and labs were all wonderful. Most of her numbers are perfect. Better than they’ve ever been. There were NO donor specific antibodies (DSAs), which we were especially grateful to know. Her angel heart is healthy and happy in its new home.
And yet… biopsy results came back showing mild rejection (C2 V3 ISHLT0, pAMR2). It’s a puzzle to me how everything can look so perfect in every way and the biopsy still comes back like this…. The team (together with her new team at the UofU) decided to not change anything. They figured the rejection was a direct result of lowering her Tachrolimis (Prograf) dose (one of her anti-rejection meds). They brought it down a month before her biopsy to see how her body would react. They need her at the lower levels by now because higher doses of that medicine can cause lots of other problems if taken long-term. This is truly a balancing act and makes me grateful for the practiced and meticulous acrobats that handle her care. They added a new cholesterol medicine to keep her arteries clean, and left everything else the same. With a little bit of hope, and trust (and maybe some prayer, and pixie dust for good measure) her body should get used to the new lower Prograf dose (since she had no DSAs) and even itself out. She’s got some blood draws coming up to check things, and a follow-up appointment with the heart transplant clinic at the U next month.
In the meantime, she’s still at school in Salt Lake learning all she can about being all grown-up and living on her own, taking care of her medical needs all by herself, building life-long friendships, and picking up an occasional tid-bit or two about interior design. Life is so good for her right now. A pretty good finale for this part of her journey, I’d say. 🙂
P.S. It was really quite strange to leave her in the capable hands of her boyfriend and roommate for the last 16 hours of her 24-hour adult-supervised recovery and head back home without her. I guess in time, I’ll get used to that change, too.