Okay, okay...so I've been really busy lately. But that's no excuse for a month without updates! I have to apologize, especially to the complete strangers that read these posts....I'm flattered by your interest and especially encouraged when you're in some way blessed. I'm still amazed to see multiple visits to this blog every day. I must thank all of you again for your prayers, without which none of the following would be possible.
But on to all the good news!
Firstly, I finished the foscarnet on March 5th. A couple days later the biopsies came back showing that the therapy had worked (I felt so much better I hardly saw how it couldn't have) and that I was free of any detectable CMV.
As the gut infection and inflammation subsided, my malabsorption issue also reversed course. This has allowed me to absorb the the thyroid medicine and vitamin D. I finally have the energy to put in a full day's work!
And it's a good thing, because that's exactly what I'm doing now. I officially started a postdoctoral research fellowship on February 25th here at Mayo. I love it. I have two outstanding mentors between whom I share my experiences and responsibilities--one heads up the Biomedical Ethics Research Unit, and the other the Knowledge and Evaluation Research Unit. I'm also planning on getting a Master's in clinical and translational research methods and I am excited for those classes to start. All in all, it amounts to what will be a very comprehensive and well-rounded education in health services methodology--not to mention the fact I've already booked conferences in Denver and Lima, Peru!
(For those that are interested, my research is currently focusing on assessments of communication quality between cancer patients and providers, the usage of some shared decision-making quality metrics, and on increasing the patient-centeredness of hospital transition processes.)
With my new job, though, I've been thinking a lot lately about ambition, career advancement, recognition, and the like. I've always sort of been an "achiever" and that can get me into trouble when it comes to maintaining balance (at least, it did in medical school). Sometimes I do things or accept challenges purely for the sake of showing myself or others that I can pull it off. Ecclesiastes 4:4 says "And I saw that all labor and all achievement spring from man's envy of his neighbor. This too is meaningless, a chasing after the wind."
Right now I'm pretty happy with what I'm doing and I know it's important for me to be working, but I'm sure the time will come when considerations of getting a PhD or going back to residency or getting a faculty position or heading up my own unit or center or whatever, etc will come into play. King Solomon's words won't be any less true then than they are now, but I bet they'll seem like it!
I have met a lot of people that have chosen to forego more money, more recognition, more respect, etc in a deliberate attempt to glorify God through the simplification and re-centering of their lives. I hope that the past couple years have taught me enough about life and what matters in it that the same might be said of me one day. I'm going to work to the extent that I enjoy it, that I'm able, and that it doesn't interfere with my primary purpose. There's a lot to be said about resting in the Lord and if any earthly pursuit is interfering with that opportunity, it needs to go. Allow me to recommend Dr. Matthew Sleeth's book, "24/6." It's about the value of the Sabbath (I actually haven't got to start it yet, but it's next in my "to read pile").
Currently Reading: "Proof of Heaven" by Dr. Eben Alexander and Hudson Taylor's autobiography; both are good, but I can't give a full review until I've finished them. And, although there are a lot of great books on how we should live our lives, nobody can touch Ecclesiastes (note: if you think it's depressing, then you don't get it).
Until next time,
Aaron
Thursday, March 14, 2013
Saturday, February 9, 2013
Good To Be Home
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.
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 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.
Wednesday, January 23, 2013
Eggs in the Foscarnet Basket
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!
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!
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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