It's been a rough few days while dealing with CMV. I have had it before, but because there were other infections thrown in the mix, I never realized how painful CMV was just by itself. Over the past few days I have been so weak that I have had trouble walking up stairs and opening jars or bottles.
Today and yesterday I spent more than half the day at the VA getting IV medicine. I have tomorrow off, but I still have to administer the medicine myself through a portable IV pump. I feel like an animal whose sole purpose is just to maintain its existence. I wake up, take a handful of pills, I then hook myself up to an IV for a couple of hours, then it's time for the lunch medicine, dinner medicine, another couple of hours of IV medicine, and some evening immunosuppressants. There are a precious few hours in the day where I feel somewhat normal and alert. For the remainder of the time, I am either exhausted, but unable to sleep either due to pain or side effects from all the medicine.
This week my biopsy results from the last endoscopy should reveal whether I still have GVHD in my gut. If not, or if it is minor, my oncologist is willing to continue with the prednisone taper. I am fervently praying that I can get off this medication as soon as possible. Although my faith remains strong, I am battling severe despair as I continue this game of hopping from one infection to another. Currently I am on 85 mg of prednisone, 5 mg of tacrolimus, and 1 mg of sirolimus per day. There is also a laundry list of other stuff, but those three are the most problematic.
Hi Nathan, it is nice to be able to hear from you, though it has been great to hear regularly from your Mom...one of my very dearest friends as you know. Ken and I pray for you, Yeonsil and Mom and Dad daily. Today we pray Paul's words from 2 Corinthians 13:14, "The grace of our Lord Jesus Christ and the love of God and the fellowship of the Holy Spirit be with you all.
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