I previously made some references to the problems Richard was having with his eyes. Since about mid- November, he's had a lot of trouble with his vision. In fact, he's had some problems with it the whole time he's been taking prednisone. His Mayo doctor first thought it would get better as he reduced the prednisone dose, but that's not happening.
The cause of all these problems is again GVHD. Richard's eyes are very dry. He has extreme photophobia and most days can't read, and lately can't drive because he can't focus or tolerate the lights at night. He's been to the othalmologist locally and has had punctal plugs put in his tear ducts. He used all forms of artificial tears, and most recently Restasis. Nothing is working.
He wears sunglasses all the time, even indoors, and our house is like a cave with curtains closed and minimal lights. He changed the lightbulbs in his bathroom to 40 watt strength.
We had planned to go to Hawaii for 10 days in February but have cancelled those plans. We are both so disappointed, but at least I can see.
Of course in my usual fashion, I've done some research on the effects of GVHD on the eyes and I'm not liking what I've found so far. Apparently T-cells from the donor preferentially attack the epithelial surfaces on the skin and mucous membranes, specifically the tear producing apparatus. The result is less tears are produced and the tears that are produced have a higher osmolarity (sort of like thickness) than normal. The increased osmolarity results in the loss of the normal cushion of tears that protects and hydrates the cornea and other ocular surfaces. Also, the tears evaporate more quickly. Without hydration, the action of the eyelid actually abrades the surface of the eye. The normal cleansing action of tears in removing tiny particles of dirt and dust is also greatly reduced. This quickly leads to inflammation.
About 60 % of allogenic transplant patients have eye involvement. The degree of disability varies, but it seems no one gets better. There are treatments like the punctal plugs, various eye drops including saline, antibiotics, and anti-inflammatories. There is also surgery to permanently occlude the tear ducts.
I recently learned of a unique, but seemingly successful treatment via the BMT-Talk mailing list. Many of these folks have had allogenic transplants, a few for mm, most for the various leukemias, lymphomas, and myelodysplasic syndrome. Anyway, a kind patient from that list sent me a link to the Boston Foundation for Sight. They treat the dryness with a custom fitted scleral lens which holds moisture on the surface of the eye. So far they only do this there and at Johns Hopkins in Baltimore.