Good news folks, my health has improved in the decade since my last post! Well, decade is a bit of exaggeration, but it has been a while.
I have been out of the hospital for several months now, and have not had to go back in. I have been going to photophoresis outpatient four times a week to get my billirueben under control, and it’s been working.
Currently, my billirueben is hovering around 0.8, which is in the normal range (optimal is 0, but I’m not complaining). Also, I have been steadily coming down off the prednisone, from 120mg a day at the start, to 30mg every other day now. I have a doctor’s appointment this coming Wednesday, and if I’m still doing good, they will cut my prednisone even more.
Speaking of cutting, as of last week I have been cut back to three photophoresis sessions a week, with a possible cut to two this Wednesday. I have also cut back on prograf, the immune suppressant that prevents against GVHD, and I’ve entirely cut a liver drug, meaning said organ is doing pretty dandy.
Finally, pending one final test, I’ve been given the OK to work again! I can only work part time, since I’ll still have to go to photophoresis two or three times a week, but it’s still exciting. I plan on getting my Bergen English Tutor job back until I can work full time, or until something better comes along.
Last but not least, I just signed up today for a sketch comedy writing class at the UCB Theatre in New York, which starts September 19th.
Oh, and I have hair again. That’s pretty cool.