Yesterday when we came into the cancer clinic for Ron's scheduled appointments, we knew that we were at a point where he needed to be readmitted. He was extremely weak, and once the swelling was gone which was one of the side effects from the medication that was stopped on Friday, it was apparent how much weight he had lost. (over 45 pounds since transplant). His bloodwork showed that his kidney function level was not at what they consider a minimum level. He has almost no appetite, so the plan is to give him a tune up with increased nutrition, and to change meds to help bladder spasms.
They have also put him back on IV steroids and upped the dosage slightly. He had some "pinking" of skin again and slight rash on his arms, face, and scalp. This could indicate some graph versus host disease returning to his skin and would be a concern. He had been gradually lessening his dosage of steroids each week because although steroids reverse the GVHD, they weaken the muscles. He will have daily visits with a physical therapist during this hospitalization. She has visited already this morning and her passion for planning an activity program, assisting, and evaluating oncology patients was evident. She is coming back after lunch to finish his baseline assessment. We are lucky that she is in rotation in the BMT unit for several months to come. The transplant social worker has visited us this morning, and food service had left diet coke for me before I returned at 8:00 this morning. They truly take care of both of us. Julia, the head nurse, talked to me last night about using this time to help myself renew. I slept at the apartment last night and will continue to do so. Also, I have a couple things that I need to take care of, so I will do those errands here in Ann Arbor. I hadn't felt like I could leave Ron for the couple hours that would be needed and because of the personal nature of some of his care, I chose not to get someone to cover for me although there have been several offers.
Love, Jan
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I know how hard it is to stop & take care of yourself, but do it whenever you can. I think your sleeping at the apartment is a good idea as it gives you a little time to let down which is very important for you. When you are caring for Ron you do whatever is necessary, things you never thought you could do, so take this time to decompress if you can.
ReplyDeleteWe are praying for you both. Love to you, Ann & Bob