I was hoping for some definitive answers/ predictions for Ron's treatment of chronic graft versus host disease. But that is not the name of this game. Each patient is unique in his response to the transplant, his complications, and his response to treatment. Today was an information gathering session for the GVHD Clinic doc who is also the director of the BMT Clinic. He was Ron's inpatient doc when he was first hospitalized for acute GVHD in September.
During the appointment a few baseline tests were done to rate lung function, range of motion, and walking. (He uses the walker.) A written survey was done regarding symptoms, and the doc did a physical exam. Due to issues in Ron's mouth and hyper pigmentation of his skin, his GVHD is called lichenoid chronic GVHD. He has an appointment tomorrow with his regular doctor and PA. His next appointment in the GVHD Clinic is in six weeks. This doctor is the GVHD specialist and consults with Ron's regular BMT doc. We were told that it would be at least 2-3 weeks more until we can go home, so we know that means at least 3 weeks. Ron does not feel like he is quite ready to go home yet. We feel a great amount of safety by being so close to U of M Hospital, and with the need for frequent appointments, it makes sense to continue living here. When Ron only requires appointments every other week, we will be on our way.
So here we are, and we are doing okay. It is amazing how quickly you can adjust to ever-changing circumstances although I would have to admit that you feel a little beat down at times. We just want to go home but understand why we must wait a few more weeks.
Love and thanks to all for your positive thoughts and support, Ron & Jan
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Ron & Jan, the two of you are absolutely amazing. I love reading the blog, it is so nice to be kept up to date on everything. I am praying for all to go well so you can return home. I can understand wanting to stay there as to be close to the hospital, it only makes sense. I try to read the blog atleast 2 to 3 times a week. Love to you both. Risa
ReplyDeleteIt was good to hear from you. I hope we can walk into the bank later in the month and thank you personally! I want to treasure every day of spring at Gilead Lake. We have a long road ahead but can see that moving home sometime this month is feasible.
ReplyDeleteHugs to all, Ron & Jan