It has been so long since I blogged (2 weeks!) that I had no idea what number day it is. I have been apologizing to people, “I’m sorry I haven’t blogged lately but there is no significant change.” There really hadn’t been any change in Jeff’s recovery – for better or worse. The same old issues were still there – nails, some fatigue, shoulder/arm limitations, shoulder blade muscle spasms, and steroid side effects including puffy face, large muscle problems, and incredible appetite.
Today, however, there is something to report. At his first solo visit to Dr. Porter’s office yesterday, Jeff was given instructions for the next taper of steroids, dropping 5 mg every other day, keeping that dose for two weeks before dropping another 5 mg, and so on. However, today Dr. Allison Rager called to say his labs showed his liver not functioning as well as they would like and that his steroid dose needs to be increased (doubled), back to 40 mg per day. She also is adding back his immunosuppressant, Tacrolimus, which he hasn’t taken for three and a half months. This means he will have to be careful again about being around sick people. Dr. Rager said she is very frustrated by this turn of events but Jeff’s attitude is, “It’s fine.Just tell me what to do.”
Recently a co-worker asked about Jeff and commented that it must be very frustrating for him to not be able to do the things he used to do. I told her it doesn’t seem to bother him too much. Doing projects at Kerry and Theresa’s house provides an opportunity for me to see what Jeff can do and how he handles challenges. It is a sort of proving ground for him, too, I suppose. I am comforted that he seems to know his limitations and does not jump into things with more enthusiasm than he should. He has noticed that his shoulder blade does not hurt too much when he does pushing jobs like spreading spackle, although there isn’t the same degree of oomph behind his stroke as there used to be, particularly when he is reaching overhead. Maybe spackling will improve his strength. Pulling motion like pulling carpet staples, on the other hand, sets his shoulder muscle into spasms. He told me that he stopped pulling staples to do some of his PT exercises in an effort to stop the pain.
Theresa’s parents are coming this weekend to help prime the walls. Flooring has arrived. Kim is coming this weekend to consult with Kerry and Theresa on their paint color choices. It is all so much fun!
Jeff and I think about and talk about his one-year anniversary a lot. This leg of his recovery has been notable mostly for its lack of significant change and we look forward to the one-year milestone with more delight than anxiety.
If you are sending prayers Jeff’s way, please pray that his GVHD settles down and leaves his poor liver alone.
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