This is kind of new, food not tasting right so…they’ve prescribed mouth rinses due to what they say is common for Chronic GVHD. Redness & sensitivity in the mouth, textures of food…Another thing they/we are trying to figure out is about his vision…he has basically no peripheral vision & his eyes feel like they have sand in them as he describes it. We have prescription eye drops, we have comfort drops & overnight gel drops but…again, he won’t let me apply them regularly. He’s a wonderful proud man that is determined to fight both illnesses his way but it’s definitely not working & it’s tearing me apart right now. Other symptoms of the GVHD is a rash that’s developing on his left forearm. It looks like a big purple birth mark that some people have. Fred Hutch (F/H) as I will refer to them from now on is keeping an eye on this too. He also had lower back surgery to remove a cyst that was causing him extreme pain removed just in September & they found a herniated disk under it that was blocked by the cyst in both CT & MRI. They repaired that. He also has what presents as spinal stenosis at the base of his neck which is causing him a lot of pain but the neurosurgeon is weary of doing another surgery right now due to the Prednisone he’s on.
Wow! I REALLY appreciate the outreach right now. Doing this is all new to me.
I’m taking things one day at a time right now.
I can answer more questions tomorrow but I need to get his evening meds together & try to get a few hours of sleep myself, if I can.