I'm home!!
Many thanks to everyone for all the thoughts, prayers, visits, cards, etc over the past couple weeks. It's humbling (and maybe even a little embarrassing) to have so many people care so openly for you, but I'm learning the value of living out Christian community for God's glory and not my own comfort. Certainly, I am intended to praise Him before men for the work He's doing through His people. The clinical improvement I've experienced in the past couple weeks is really pretty remarkable and it's definitely helped to brighten my spirits and to increase my hope for a complete recovery. Consider Him praised.
Although I was technically released from the hospital yesterday, there's still a long and intense treatment regimen to endure, but it's a lot easier when you're not feeling so miserable. And even though Beth and I were never more than a few miles apart, we missed each other a great deal and it's therapeutic just to be back together. I will need to complete another four weeks or so of foscarnet therapy from home and I'll need to go in to the hospital every couple days for labs and electrolyte replacements, etc. My renal function has to be monitored on a close and continuous basis and the drug dosage and schedule has to be altered accordingly. I will also need to go in for photophoresis treatments a couple times a week; these sessions will gradually be reduced in frequency between now and September (yeah, September!).
I'm on too many medications to count but my first goal is to figure out a schedule and regimen that doesn't leave me so drowsy and disconnected during the day. I've already had the displeasure of recognizing that over the past couple weeks I'd entirely blocked out any memory of receiving some meaningful notes, visits, or conversations.
Anyway, I've acquired a number of books (as birthday gifts mainly) that I need to start reading so that's my plan for the rest of the day. Again, thanks to everyone for all the support. And congratulations to Alain and Deborah Mukwege on the birth of their beautiful daughter.
Saturday, February 9, 2013
Saturday, February 2, 2013
Pulling out all the stops...
In my last update, I mentioned we'd started foscarnet therapy in hopes of eradicating my CMV infection. That was supposed to be an outpatient process but I turned out far too frail to pull that off and I've been back in the hospital since the 24th dealing with a lot of nausea and been feeling pretty miserable.
We really are pulling out all the stops. We're combining foscarnet with cytogam (which is human immunoglobulin directed against CMV) to treat as aggressively as possible. The regimen requires a lot of fluids which has become troublesome for me. For reasons that aren't entirely clear, I'm retaining a lot of fluid (to the tune of 20 lbs worth or so). I have fluid in my abdomen and around my lungs and around my heart and just about anywhere else you could imagine. I'm not meant to live as a 155 lb man and all the extra fluid makes it hard to breathe at night. But the foscarnet is toxic to my kidneys (and has already caused a small jump in my creatinine) so we can't just diurese at will. It's a fine balance that no one is completely confident in handling. I had a drug holiday last night and this morning and was able to use some lasix. Plan is to restart the foscarnet tonight at a slightly lower dose.
To help encourage CMV eradication, we had backed off my immunosuppression slightly. This has caused a bit of a GVH flare in my skin and so I've got a pretty nice rash. To help "paralyze" my auto-reactive T cells long enough to get the virus cleared we're actually trying a therapy called extra-corporeal photopheresis. I'd honestly never heard of such a thing until this week but it basically amounts to stunning my T cells with ultraviolet light and then returning them to my body.
Otherwise I've had a couple low grade fevers that have got ID more involved. Also had a diagnositic thoracentesis of a fluid collection around my lungs, a couple CT's, and an echo. Nothing remarkable to report.
If all that medical mumbo jumbo is too exhausting for you, just know that I'm still pursuing the CMV treatment but that things have become increasingly complicated and challenging. Beth and I are fortunate to have the presence and support of both of our moms here and that helps. Thanks to everyone for their thoughts and prayers.
Tomorrow, I turn 28.
We really are pulling out all the stops. We're combining foscarnet with cytogam (which is human immunoglobulin directed against CMV) to treat as aggressively as possible. The regimen requires a lot of fluids which has become troublesome for me. For reasons that aren't entirely clear, I'm retaining a lot of fluid (to the tune of 20 lbs worth or so). I have fluid in my abdomen and around my lungs and around my heart and just about anywhere else you could imagine. I'm not meant to live as a 155 lb man and all the extra fluid makes it hard to breathe at night. But the foscarnet is toxic to my kidneys (and has already caused a small jump in my creatinine) so we can't just diurese at will. It's a fine balance that no one is completely confident in handling. I had a drug holiday last night and this morning and was able to use some lasix. Plan is to restart the foscarnet tonight at a slightly lower dose.
To help encourage CMV eradication, we had backed off my immunosuppression slightly. This has caused a bit of a GVH flare in my skin and so I've got a pretty nice rash. To help "paralyze" my auto-reactive T cells long enough to get the virus cleared we're actually trying a therapy called extra-corporeal photopheresis. I'd honestly never heard of such a thing until this week but it basically amounts to stunning my T cells with ultraviolet light and then returning them to my body.
Otherwise I've had a couple low grade fevers that have got ID more involved. Also had a diagnositic thoracentesis of a fluid collection around my lungs, a couple CT's, and an echo. Nothing remarkable to report.
If all that medical mumbo jumbo is too exhausting for you, just know that I'm still pursuing the CMV treatment but that things have become increasingly complicated and challenging. Beth and I are fortunate to have the presence and support of both of our moms here and that helps. Thanks to everyone for their thoughts and prayers.
Tomorrow, I turn 28.
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