Yesterday's visit to the hospital was relatively quick and painless. Our friend Marcus is doing a rotation at the hospital, so he provided some entertainment while we were there. Joe tested negative for CMV again. Yay! This is really wonderful news. With Joe's counts and the drugs he is on, the doctors would have preferred to keep Joe on Foscarnet, at least a few times a week until Day 100. Since Joe developed a side effect, the doctors are keeping him off everything used to treat CMV for now. If Joe were to test positive again (and we know that he will NOT), there is a third drug (after Ganciclovir and Foscarnet) that would be used as treatment.
The not so fun parts of this week are that Joe's GVHD rash seems to be getting worse again. As you might recall, his skin was peeling like crazy, but the rash seemed to be healing. The peeling continued in waves, and the rash continued to look better. As the rash got better, the steroids were tapered more and more. Over the weekend, the rash started to look more pink again. Now, it seems that the rash is back with a vengeance, and Joe is itching like crazy. He calls it alligator skin. Yesterday, the steroids were increased slightly. Hopefully that helps. To make things even more fun Joe is experiencing some edema. It is not too much of a concern right now, but Joe's usually slender and sleek ankles and feet now look like they belong to Miss Piggy. Joe is not really feeling like himself right now. And finally, because the rash and edema are not enough to procur sympathy from others, the Hemorrhagic Cystitis which Joe so eloquently described in a previous post has returned.
Joe isn't exactly enjoying all of this. How could he? But he is being tougher than can be expected under the circumstances. Tomorrow we'll be returning to the hospital. We'll keep our faithful readers updated!
The Lord will sustain him on his sickbed and restore him from his bed of illness.
~Psalm 41:3
2 comments:
I'm so happy to hear Joe tested negative again!!! But the rash and swelling do not sound like fun - hang in there, cause the day where you write that Joe is symptom free and booking that vacation to Fiji is right around the bend!! Much love to you both! Beth & Dave
Well at least the CMV was negative...but the aligator skin and Miss Piggy ankles and cystitis are enought to get anyone down.
I know that your smiling face and tender care must bring him much comfort. Praying for each and every day, gla
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