Just a little update today… informal…. not perfect… letting you know what’s going on.
I am 10 and a half months post transplant. I have Chronic GVHD of my liver along with Avascular Necrosis in my leg. For the past 6 weeks I have been doing ExtraCorporeal Photopheresis at Sylvester Cancer Institute, University of Miami, twice a week. I also do labs, blood work, follow ups, and get magnesium twice a week at Nicklaus Children’s Hospital….. which means I have been spending 4 days at least, in the hospital receiving treatments/ infusions. Now starting PT (physical therapy) on the “off” days”. It has been exhausting to say the least and it is a huge challenge. As far as the AVN: it is death of bone tissue due to lack of blood supply, this happened to me because of long term use of steroids in my treatment. Maybe chemo, too. Maybe radiation. I use crutches and a wheelchair to get around now for the past month and this week I will have my first physical therapy session and meet with the Orthopedist who diagnosed me with AVN and did my MRI. I am really hoping that with Physical Therapy I will have a smooth recovery, because being in crutches and in a wheelchair AND going to the hospital 4-5 a week is not very fun. It also makes the quality of life very difficult. It seems like I still have a few more months of being in the hospital this much, so I have a long road ahead of me. I also have to start a new medication next week for my liver because my Bilirubin (which is part of liver function) has not been improving, so my doctors are a bit concerned and would like to add a new medication because we do not want any long term damage to my liver. This new medication is called Anakinra, a subcutaneous injection (shot) I will get 2 times a day.