Hello everyone,
11 months post transplant. I have bad news and good news. Let's get rid of the bad news first:
Such a textbook case. If there is any GVHD that is in the manual, I had it or have it. (Sigh!).
GVHD of the vulva/vagina. Symptoms: itchy, burning sensation sometimes, white peeling skin (mucosa). Actually it started around a month ago, and I thought it was a flare up of my former urinary tract infection. I got my urine tested, which turned out negative for UTI, so I got some topical cream, a light steroid, for the itch and pain. Confirmed GVHD by elimination. The important thing is when showering or bathing, not to aggravate the area even with soap and water.
GVHD eyes. I always had a sensation that there was a foreign object, a speck of dust in my eyes. Now a part of the left eye is teary, my far-left vision is sometimes blurry. My doctor said that this is not a good sign. He wants to rule out CMV of the eye (!?) Never heard of that. So an appointment has been set up with the hospital's eye-doctor tomorrow morning. I saw her in February, and she knows about GVHD. I trust her, but still a bit anxious. Any advice for me, Ray?
Now to the good news
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Blood counts great:
WBC (3.2-7.9) 7.3
RBC (3.70-5.07) 4.30
HGB 14.0, HTC 43.1
Platelets (155-350) 192
GVHD gut totally under control, I can eat practically anything; preference has changed from rice to bread; hard crunchy foods to soft foods, sour to sweet (The dentist found 4 cavities!).
GVHD of the liver under control, the highs have developed a declining trend.
My prednisolone has been tapered from 7.5 down to 5mg/day. Still have moonface though
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I have an appointment with the hematologist, the transplant team and coordinator next month for my ONE YEAR post transplant. Now THAT is something to look forward to. Aah, the one year mark 2nd June, coming up soon.
Just wanted to update everyone on the forum on my progress. Hope it gives you some encouragement. You are all in my daily prayers.
Meri