I’ve been out of the hospital for nearly a week now and doing fairly well. Yesterday I was running a fever all day and felt very tired, but took Tylenol to keep the fever down. Fipp arrived last night and it is good to have her here. This is the first time since early February that she has been able to see me out of the hospital.
The docs still do not know what is causing the fevers. The fevers seem to be cyclical and that is not consistent with GVHD related fevers. I was taken off Cellcept, which can cause GI symptoms that mimic GVHD. I was put on another medicine that is much better tolerated called Rapamune. It will still be about 2 weeks before we can say for sure that Cellcept was a contributing factor to the GI symptoms or not. Other than that I am still receiving all my other meds. The number of pills I take is down to 5 a day. Next week the docs will explore the possibility of taking me off the IV Prograf and having me take it in pill form. That will be dependent on a number of variables though and they do not want to change too many things too quickly. They are also exploring the use of photopheresis. Photopheresis is a very recent development in the treatment of autoimmune conditions like Lupus and Cutaneous T-Cell Lymphoma. It has shown promise in treating GVHD of the skin, so it stands to reason that it would work for the gut too. The process is complicated, but the side effects are minimal and I won’t lose much during the treatment, so I’m on board. The photopheresis process looks like this. You’re hooked up to a pheresis machine to extract your blood. The white blood cells are then separated from the rest of the blood and washed in a drug called UVADEX. The treated cells are then exposed to UV-A light and mixed back in with the rest of the blood. The whole concoction is then returned to your body. The idea being that the UV light alters the white blood cells’ function and they can suppress or even eliminate GVHD as opposed to contributing to it. My docs and I figure it’s worth a try.