Since my Life with GVHD update, I've continued to be pretty ill. Last Wednesday I was actually admitted to the hospital for accelerated hypertension, continued abdominal pain and bleeding, and generalized weakness. I was evaluated by endocrine, nephrology, and GI and allowed to come home Saturday (I kinda forced the issue but nothing was going to happen in the hospital that couldn't be done as an outpatient at that point).
Anyway, the biopsies came back Tuesday (yesterday) and showed diffuse and severe CMV infection of my esophagus, stomach, small and large bowel (you should see the pictures--pretty impressive). As I've eluded to in the past, I'm on the first line treatment for this bug but it's clearly not working. The pathology showed complete villous atrophy which mostly explains my malabsorption issues (my TSH is over 100 now).
But, I consider this all good news because it means we can try a different medication. As I write this, I'm sitting in the Infusion Therapy Center receiving my first dose of foscarnet (the go-to drug for gancyclovir-resistant CMV). Foscarnet is kinda a nasty drug which is why I need to be monitored for the first couple doses. It's going to be an IV therapy twice a day and it will require a good amount of IV fluids to be administered concomitantly to avoid injury to the kidneys or serious alterations in my electrolytes. But if it works, it could really improve my quality of life and make the treatment of a lot of other things much more straightforward....so pray that it does!
Wednesday, January 23, 2013
Who will it be today? #6
Who will it be today? The patient parent
Yesterday I had some time to kill before one of my appointments. I was particularly exhausted so I decided to rest in a comfy chair with a nice view of town. But I didn't get much rest.
A teenage autistic boy happened to have an upcoming appointment on the same floor, and he wasn't looking forward to it. He was screaming, acting out, and carrying on in such a way that it seemed the whole clinic must have been aware of his presence.
In the midst of all the staring and head shaking and pseudo-empathetic comments, I couldn't help but be drawn to the peaceful, calming presence of the boy's father. He could have chosen to be embarrassed or to lose his cool or to lash out at his son in a completely unproductive way. But he understood his son like no one else and, over the years, he had undoubtedly been well-trained in the practice of patience and self-control. I admired him in that moment.
I knew there wasn't really anything I could do to help the situation but I did walk up to the gentleman and express my uninformed sympathy for what I anticipated to be a very trying day. I told him about Beth and her experience with the autism center. I discovered that the young man had already had lunch but that he does like pizza so I gave dad a Toppers coupon and a copy of my letter. Hopefully the gift of free pizza will be a blessing this week.
I told them I'd be praying the day would go as smoothly as possible and then got out of their hair. It's hard for me to even fathom what life is like for the parents of children with special needs. I know a lot of people say things like "they must be special people" or that "I could never do that." Although there's a lot of truth in that line of thinking, it's probably an oversimplification. We sell ourselves short too often and we have too small a view of our God-enabled capabilities. This man loved his son and so his attitudes were adapted to accommodate what his son required. Every trial we face is a similar opportunity to be molded. I hope the Spirit grants me the peace and patience and self-control that I witnessed.
Who will it be tomorrow?
Yesterday I had some time to kill before one of my appointments. I was particularly exhausted so I decided to rest in a comfy chair with a nice view of town. But I didn't get much rest.
A teenage autistic boy happened to have an upcoming appointment on the same floor, and he wasn't looking forward to it. He was screaming, acting out, and carrying on in such a way that it seemed the whole clinic must have been aware of his presence.
In the midst of all the staring and head shaking and pseudo-empathetic comments, I couldn't help but be drawn to the peaceful, calming presence of the boy's father. He could have chosen to be embarrassed or to lose his cool or to lash out at his son in a completely unproductive way. But he understood his son like no one else and, over the years, he had undoubtedly been well-trained in the practice of patience and self-control. I admired him in that moment.
I knew there wasn't really anything I could do to help the situation but I did walk up to the gentleman and express my uninformed sympathy for what I anticipated to be a very trying day. I told him about Beth and her experience with the autism center. I discovered that the young man had already had lunch but that he does like pizza so I gave dad a Toppers coupon and a copy of my letter. Hopefully the gift of free pizza will be a blessing this week.
I told them I'd be praying the day would go as smoothly as possible and then got out of their hair. It's hard for me to even fathom what life is like for the parents of children with special needs. I know a lot of people say things like "they must be special people" or that "I could never do that." Although there's a lot of truth in that line of thinking, it's probably an oversimplification. We sell ourselves short too often and we have too small a view of our God-enabled capabilities. This man loved his son and so his attitudes were adapted to accommodate what his son required. Every trial we face is a similar opportunity to be molded. I hope the Spirit grants me the peace and patience and self-control that I witnessed.
Who will it be tomorrow?
Sunday, January 13, 2013
Life with GVHD
It's been rough lately. Sometimes, downright discouraging. My disease has focused in on my GI tract and it just doesn't seem to want to relent. I am in a constant state of intestinal inflammation. I can't eat anything without expecting severe pain and a toilet full of blood...and really I have come to expect those things whether I eat or not.
It's hard to sleep because, even when my mind and body is weak and exhausted, the cellular war in my gut is going on 24/7, increasing my metabolic demands and my heart rate around the clock. I've learned to knock myself out with pills so that, at the very least, I can get a couple hours of sleep between trips to the bathroom. Parenteral nutrition is the only thing keeping me from wasting away to nothing.
But I think the hardest part of all this is just not being able to do anything. I may last a couple hours at the office before I have to come home and lay down. I'm almost exclusively working from home unless there is a meeting or specific need for me to leave. Although this sort of flexibility is why I have the job I have, I hate the fact that I'm not interacting with people. And even more, I hate the fact that when I'm out in the world I feel so ill I don't even want to interact with people. It makes it harder to see the point of all this.
But I know it will pass. It's just a season and I have to keep reminding myself of that. I still have a lot to be thankful for and a lot of supportive people around me. I'm beginning to realize the value of accepting that I am sick and that it's okay to let people help me and pray for me. I'm beginning to see the point of humbling myself; it's an important part of accepting where God has placed me.
As I've read more of Dietrich Bonhoeffer's biography, I've realized the value of community. True community is referenced in Paul's 1st letter to the Thessalonians when he tells them what a joy it was not only to share the gospel, but to share their lives. This sort of fellowship requires vulnerability and honesty about who we are and what we're dealing with.
Speaking of reading books, I'll post a list of my year's reading list soon!
It's hard to sleep because, even when my mind and body is weak and exhausted, the cellular war in my gut is going on 24/7, increasing my metabolic demands and my heart rate around the clock. I've learned to knock myself out with pills so that, at the very least, I can get a couple hours of sleep between trips to the bathroom. Parenteral nutrition is the only thing keeping me from wasting away to nothing.
But I think the hardest part of all this is just not being able to do anything. I may last a couple hours at the office before I have to come home and lay down. I'm almost exclusively working from home unless there is a meeting or specific need for me to leave. Although this sort of flexibility is why I have the job I have, I hate the fact that I'm not interacting with people. And even more, I hate the fact that when I'm out in the world I feel so ill I don't even want to interact with people. It makes it harder to see the point of all this.
But I know it will pass. It's just a season and I have to keep reminding myself of that. I still have a lot to be thankful for and a lot of supportive people around me. I'm beginning to realize the value of accepting that I am sick and that it's okay to let people help me and pray for me. I'm beginning to see the point of humbling myself; it's an important part of accepting where God has placed me.
As I've read more of Dietrich Bonhoeffer's biography, I've realized the value of community. True community is referenced in Paul's 1st letter to the Thessalonians when he tells them what a joy it was not only to share the gospel, but to share their lives. This sort of fellowship requires vulnerability and honesty about who we are and what we're dealing with.
Speaking of reading books, I'll post a list of my year's reading list soon!
Thursday, January 3, 2013
Christmas Vacation
Well, things are back to the grind in chilly Minnesnowta. It's good to be "home" and sorta back in our normal routine but it was nice (though at times exhausting) to see all our family in Missouri.
Christmas was a success all around, although it was postponed for one side of my family as my grandpa remained in the hospital. Beth and I both acquired a good amount of practical loot. I'm currently enthralled in a book I received from my mother-in-law on the life of Deitrich Bonhoffer (appropriately titled, "Bonhoeffer," and written by Eric Metaxas).
Although equal time was spent with each side of the family, there was only one event photogenic enough for me to chronicle (which I have to credit to my other favorite gift, a Motorola Electrify M...what a great phone). These are a couple pictures of a Duff family tradition--the Christmas Eve visitation of Santa Claus. This same dude has been doing this every year for as long as Beth can remember....and he's good. I'm just glad I didn't have to sit on his lap this year.
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