Chronic GVHD

Since I was weaned down on the Cyclosporine (immuno-suppressive medication) a week ago, I noticed little symptoms creeping up...until now they were so small that they weren't bothersome. But, all of a sudden, I developed a red, raised, terribly itchy rash and the texture of my skin changed to be VERY dry, mottled and a little wrinkly. The rash has rapidly spread over my entire face, with it worse on my eyes and chin. My scalp and ears are affected too.

After looking up Graft-vs-Host Disease (GVHD) online, I learned that some of the other symptoms I've had this week are part of chronic GVHD. I've been having muscle pain and imobility which is called fascitis. I've noticed fissures at the corner of my mouth and severely chapped lips, dry mouth and edema this morning. I also had detected changes in my nails that are also attributed to chronic GVHD. There is also GI involvement where I just don't feel right, less appetite and sometimes nausea.

I'll probably have to up my dose again on the cyclosporine and maybe the steroid until the rash clears up. My doctor told me this morning to wait a day or two to see if it spreads, but I cannot wait and will go back up on the cyclosporine tonight.

I had acute GVHD after the transplant which was no fun at all. When it occurs like this, after the 100 day mark, it's called chronic GVHD and can last up to three years. The good news is that a mild case of GVHD is good for transplant patients, keeping them in long-term remission. The activated immune system will gobble up any potential cancer cells that might cause a relapse in someone who doesn't get GVHD. That's the layman's explanation. I'm too tired to go technical on you.

Please pray for the GVHD to be under control and not to spread. I am especially uncomfortable from the itchy rash on my eyelids and from the fascitis (muscle pain and stiffness).

Thank you for your continued support!

Of all the characters in the Bible, I've often felt I could most relate to Job...not to feel sorry for me, as I find great hope in Job and these trials just increase my faith all the more as I seek Him.

Job 19:25-27

I know that my Redeemer lives,
and that in the end he will stand upon the earth.

And after my skin has been destroyed,
yet in my flesh I will see God;

I myself will see him
with my own eyes—I, and not another.
How my heart yearns within me!