HOLY MOLY - where does the time go? :) We have had a busy month! John's 100 day post transplant meeting went really well. They could not have hoped for a better result than what has happened. All of the tests were great. Just some weird things: John has an antibody to his donors red blood cells. The donor always win, but it could take a year or so. So his red blood cell (RBC) count is low. But, it has been holding its own and he has not needed a transfusion for it. They check weekly and it has been ok. The other odd thing is that he had a bone scan that was really odd. The reader said that his bone lesions were significantly worse than his last scan (which was in May). This is perplexing?? The Dr. says if it was that much worse then John would be feeling it and would be in pain and his cancer # would not be 0. So, they were not worried and will just repeat the test in December. His platelets are still going up and almost normal. His liver numbers are all almost normal. One of them is not quite normal, but close to it. John still has a clinic appointment weekly, physical therapy weekly, occupational therapy weekly and his regular therapist (who he loves - she used to be a social worker on East 8). So, he has appointments 4 days a week. His steroid dose is now at 30 mg a day (as opposed to 180) and has been going down 10 mg a week - so this week should be 20 :) Getting so much closer to being off of them. His swelling is starting to just barely go down. His energy level is getting much much better. He can go up and down the stairs with out holding on to the railing and can get off of the floor by him self :) He also has started driving a little bit. But because his blood sugars have been high it effects his vision and he can't see great. But, his blood sugars have been coming down and that has not been a big issue at all.
We have had 2 non scheduled visits to East 8 in the past few weeks though. One time because John was coughing a lot. They did an aspiration and nothing came of it - just an annoying cough that now is almost gone. Then one week ago he was complaining of pain while urinating. I though it might be a UTI, so he called and I took him in. Turns our there was bacteria in his urine but he also tested positive for BK Virus. This is a nasty virus. It is eating at the lining of his bladder, so he literally pees blood and it is painful every time he pees. AND he has to pee every 30 min or so. So, he really doesn't go anywhere these days. It could take weeks - months to run its course. Kind of super annoying.
It may be a long winter - I hope not though. Last winter he had pneumonia twice and that requires a hospital admittance :( Hoping to avoid that this winter. Overall John feels pretty good and is doing as good as could be expected.
Here are so before and after pictures of steroid face swelling - called cushing sydrome:
This is when we were leaving the hospital after John's 3 weeks of hell in July. He is with one of our favorite CNA's Ammie.
This is John and I about 2 weeks ago on the Alpine Loop drive.
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