Yesterday was a rough day.
I received word in the morning that a family friend (who I suspect was about 20 years old) was killed serving in Afghanistan. Although I've been aware in principle of the fact that people are giving their lives for this country on a regular basis, this is easily the closest to home this truth has hit for me. My heart aches for the family, whom I know well.
Beth had been out of town this weekend at the wedding of one of her friends from college. She called yesterday evening to inform me of a change of plans; she needed to help drive another friend that had been attending back to Missouri. This particular friend had just received a call alerting her that her father had unexpectedly died of a massive heart attack. He was 55.
Now, I suppose I tend to think of myself as someone who has been graced with more discernment than average when it comes to coping with difficult situations like these and that I am also usually pretty good about seeking an eternal perspective and resting in the peace that comes with that. But not today. Maybe that will come, but right now I have no strength or wisdom to offer; I feel completely inadequate. I suspect there are two possible explanations for this: either (1) I am simply not in an appropriate place spiritually to know God's purpose in what has occurred or that (2) I am simply responding as the emotional, weak, and inadequate creature that I am.
In this case, there's probably truth to both explanations, but I think it raises an interesting question about the responsibility or usefulness of the Church in these sorts of situations.
There may not be a more painful experience in life than losing a child, but losing a parent before his or her time would follow somewhere close. Fortunately, in both of these cases, the individuals lost were believers. Of course, this still leaves behind two grieving families that the Church can and should reach out to in what I believe are two main ways. The first is through support (i.e. that we should offer hope, wisdom, understanding, encouragement, etc in so much as we are able). And the second, which I think we may overlook at times, is through participation. In scripture, we're told to share each other's burdens, to come along side one another and to mourn with those who mourn. There is something God-ordained about this type of activity that allows us to tap in to the maximal amount of good that can come from something bad. I think God wants all of us to grow in and through the experiences of one another. The truly amazing thing is that He's created a system (the Church) that actually permits this. The Church is supposed to be an intimate community of brothers and sisters; it's supposed to be united, to be and behave as one body. When it manifests as intended, it permits the corporate sharing of life's ups and downs with one another and ultimately reflects the love and intimacy that Christ has with us, which glorifies Him.
I'm certain the families of those lost yesterday are feeling inadequate, but maybe my feelings of inadequacy aren't entirely inappropriate. Rather, perhaps I honor their suffering and their loved ones by sharing in their pain and letting God extend its impact to my life, by letting God accomplish the maximum amount of good from this.
The Church is not as unified or as intimate as it should be, and that is just a reflection of our culture. I think God designed us to be more tightly and genuinely connected (facebook friends was not in the original plan) so that we really could be enacted upon, sharpened, and shaped as a single entity. Think about the impact that sort of reality would generate.
======================================================================
Anyway, in an effort to be efficient....let me switch gears and give an update on what Beth and I've been up to:
The hospital ministry has been more rewarding for us, I'm sure, than for anyone we've reached out to. We feel God's pleasure with it but are struggling to get "referrals." The bright spot in yesterday's gloom was the discharge of a friend with renal cell cancer. She was able to have her tumor completely taken out and I believe she should be completely cured! It was a pleasure getting to know her and her family.
Beth has to go back to school tomorrow (who's going to do all the chores around the house?!) although the kids don't actually show up until after Labor Day. I will miss having her at home. Hopefully some day I'll get a job where she doesn't have to work if she doesn't want to.
Research is going well and I love what I do and the people I work with. Truly blessed to stumble into what I'm doing. Classes are also going well but the sum of a full time job and being a full time student keeps me busier than I probably should be at times. Trying to work on a healthy balance here as the pain is mostly self-inflicted! If you're interested in thinking about the science and theory of healthcare delivery, you can read my blog post here.
And, as far as my health, it's ups and downs always. Great days alternate with not so great ones. Nothing really specific to report but prayers are always welcome. I will try to get a post up soon about the fact that I'm now 2 years post-transplant!
all for now.
Sunday, August 25, 2013
Monday, July 22, 2013
Healthcare That Fits
As part of my research focus, I spend a lot of time thinking about healthcare and what its purpose is. It seems to me that healthcare (and therefore health itself) is only useful insofar as it generates happiness. If being healthy (or making someone else "healthy") doesn't translate into any measurable form of improvement in the experience of life, then it doesn't really accomplish anything meaningful. Now, there are certainly situations where "enduring" good health or its necessary treatments or lifestyle changes may not bring immediate enjoyment...but, often these sorts of interventions permit the sorts of results patients want in the future--the ability to play with your grandkids, the opportunity to walk your daughter down the aisle, etc. Distinguishing these cases and indications is essential, and carefully weighing the evidence of what is and is not likely to have desired effects is central to the practice of high-quality care. Determining what fits who is one of the biggest challenges in healthcare, and it requires intimate understanding of what it is that makes our patients tick.
Americans spend more money on healthcare than anyone else in the world, but we aren't the happiest people in the world (not even by a long shot). Then again, we aren't the healthiest either. Somewhere something is getting lost in translation. Medicine doesn't fit people like it's supposed to. I think part of this stems from the fact that healthcare is slowly losing sight of its purpose.
According to the Bureau of Labor and Statistics, healthcare is a "service-providing" industry. Sometimes it seems more "goods-producing." We do not often think about health services as a resource designed to meet our needs and life desires. Who thinks of their physician in the same way they think about their auto mechanic or their hair stylist? And yet, healthcare, like these other service industries, exists to meet the needs of its consumers (i.e. the patients). But I think anyone would balk at the suggestion that their mechanic could impose whatever repairs he sees fit or that their hair stylist could simply choose a haircut that matches his or her taste without even considering the preferences of the one forced to wear it!
Minimally disruptive medicine (minimallydisruptivemedicine.org) is one part of the solution to this problem, as it strives to remove unnecessary and useless care that only adds to patient burden. It also seeks to maximize patient capacity to be well, such that simply being a patient is not the end in itself, but is a means to an end that brings value to a patient's life.
I have become increasingly familiar with the role of health or wellness coaches (and, more broadly, life coaches) can play in helping to achieve these goals. In many cases, the sort of holistic evaluation and approach to well-being that coaching can provide is of far more value than any diagnostic test or intervention traditional medicine can offer.
Case in point. My grandpa has had a number of health issues develop over the last decade or so. His prescriptions and various medical appointments and evaluations help to bring some degree of health benefit, but they do not bring happiness or any value in regards to his quality of life. Thanks to the accurate perception of concerned family members, however, he was given a couple dogs that have absolutely changed his outlook on life. They've brought meaning, joy, and purpose to his life in a way that traditional medicine never could. Identifying the things that bring meaning to patients' lives is essential to achieving the outcomes we desire. I am excited to think about this more seriously and generate more formal approaches to this type of patient assessment. I am interested in people's thoughts.
Americans spend more money on healthcare than anyone else in the world, but we aren't the happiest people in the world (not even by a long shot). Then again, we aren't the healthiest either. Somewhere something is getting lost in translation. Medicine doesn't fit people like it's supposed to. I think part of this stems from the fact that healthcare is slowly losing sight of its purpose.
According to the Bureau of Labor and Statistics, healthcare is a "service-providing" industry. Sometimes it seems more "goods-producing." We do not often think about health services as a resource designed to meet our needs and life desires. Who thinks of their physician in the same way they think about their auto mechanic or their hair stylist? And yet, healthcare, like these other service industries, exists to meet the needs of its consumers (i.e. the patients). But I think anyone would balk at the suggestion that their mechanic could impose whatever repairs he sees fit or that their hair stylist could simply choose a haircut that matches his or her taste without even considering the preferences of the one forced to wear it!
Minimally disruptive medicine (minimallydisruptivemedicine.org) is one part of the solution to this problem, as it strives to remove unnecessary and useless care that only adds to patient burden. It also seeks to maximize patient capacity to be well, such that simply being a patient is not the end in itself, but is a means to an end that brings value to a patient's life.
I have become increasingly familiar with the role of health or wellness coaches (and, more broadly, life coaches) can play in helping to achieve these goals. In many cases, the sort of holistic evaluation and approach to well-being that coaching can provide is of far more value than any diagnostic test or intervention traditional medicine can offer.
Case in point. My grandpa has had a number of health issues develop over the last decade or so. His prescriptions and various medical appointments and evaluations help to bring some degree of health benefit, but they do not bring happiness or any value in regards to his quality of life. Thanks to the accurate perception of concerned family members, however, he was given a couple dogs that have absolutely changed his outlook on life. They've brought meaning, joy, and purpose to his life in a way that traditional medicine never could. Identifying the things that bring meaning to patients' lives is essential to achieving the outcomes we desire. I am excited to think about this more seriously and generate more formal approaches to this type of patient assessment. I am interested in people's thoughts.
Thursday, July 4, 2013
Hospital-I.T.Y. (Synopsis)
Here's the rationale for Beth and I's new hospital ministry: (copied and pasted from our ministry proposal)
The
inspiration for this ministry comes from our understanding of God’s special
love for the sick and the hurting.
From Isaiah 61, we know that one of the evidences of God’s Kingdom on
earth is the binding up of the broken-hearted. This fallen world is full of hurting people, and just as
Jesus sought them out and restored them in His ministry, we are called to do our
part to “restore our broken world” and show God’s love to those that need it
most.
This ministry has two general purposes. The first purpose is to show God’s love through Christian
hospitality, especially to patients and families that are visiting Rochester
from afar and are separated from their normal support system. This may include anything from a
friendly chat to a home-cooked meal to a parking spot to a spare room,
depending on the situation. The
second purpose is to provide spiritual support and understanding to those that
desire it. This will depend on the
situation and on interest but can include everything from a short prayer, to a
listening ear, to a formal family support group and weekly devotional.
We believe this ministry fits with the CCC DNA and the church mission in
obvious and important ways. We
believe all Christians are called to reach out beyond the walls of the church
building, to love in radical ways, and to make the gospel of Jesus Christ
attractive to our broken world. We
believe this ministry can restore people while bringing glory to God and
declaring the presence of His kingdom.
1.
Who is the intended audience for this project?
We believe that the patient’s primary source of comfort and support often
comes from his or her family and medical providers, assuming these people are
present and that the dynamics are functional (as is the case in most Christian
families). In these cases, our
primary focus will often be on the families, who are frequently hurting as much
or more than the patient but (especially when coming from afar) lack necessary
support, feel lonely, and struggle with issues of understanding.
2.
Will you be recruiting a team of people and how
will they be selected?
We would be thrilled to welcome
anyone with a heart for the hurting into this ministry. Anyone could potentially play a role,
depending on his or her comfort levels and spiritual gifting. The size and scope of this ministry
will be directly proportional to the number of people who are interested in
serving in it. It would be nice to
have a registry of people willing to be contacted for hospitality reasons
(making a meal, offering a spare room, etc). People with clinical backgrounds are particularly
well-suited to make hospital visits without violating any rules or norms,
whereas people with the gift of teaching could take turns leading support
groups at each hospital, etc.
Basically, the bigger the team, the more people we can open our services
up to and, hopefully, the bigger the impact. There are numerous resources on hospital ministry that can
be made available to anyone interested.
A training workshop would likely be in order for those particularly
interested in bedside hospital ministry.
3.
What is the process for ministry
engagement? Timeline?
This ministry can begin effective
immediately. At this stage, it is
only the two of us, so we simply can’t open up our services to every patient
and family in Rochester, as much as we’d like to. It makes the most sense, currently, for CCC to refer
patients and families that they are aware of to our ministry. Depending on the level of ministry involvement
and the closeness of the patient relationship, it is reasonable for each
ministry team member (couples counting as 1) to carry a “case load” of 1 to 3
patients. If the ministry really
takes off, we would like to make the Mayo chaplains aware of us so that they
can refer appropriate patients and families as well. Perhaps by summer 2013, it would be nice to start up a
family support group that meets within the hospital. This can be advertised within hospital chapels. Because the hospital population is
constantly overturning, these meetings can be a recurring devotional and
discussion of 3-4 topics (worry/uncertainty, suffering, comfort, etc).
4.
How will success be measured upon ministry
completion?
We will always have the sick, so
it’s hard to imagine this ministry reaching a state of completion. If this ministry is truly led by the
Spirit and is consistent with God’s heart for our community, then we should
expect spiritual results. I would
hope, as it has been our experience, that the ministering will gain as much
comfort and insight from this ministry as those being ministered to.
Monday, July 1, 2013
Update: July 1, 2013
Let's try to get everyone up to speed with what's been going on with me over the last few months:
Work/Research: A lot to report here. I'm starting to find my groove in health services research. I mostly focus on figuring out ways to make healthcare make more sense. My unit works on erasing the disconnect between patients and their clinicians. I try to make health fit the goals of the patient and empower patients to accept nothing less. This means I study a lot of things, but especially the way patients and clinicians communicate. I'm looking at this critically right now in the context of communication with cancer physicians and studying the concept of "shared decision making." Beth and I just returned from a conference in Peru where I was able to sharpen my understanding of this better. You can watch some great keynotes about this here: http://isdm2013.org/video-archive/
My mentor, @vmontori, is promoting a concept called "minimally disruptive medicine." I will be blogging about that some here...and some here: http://minimallydisruptivemedicine.org/ You can also follow my musings on this and other things on twitter @aaronleppinmd I start my Master's classes officially next week.
Life/Health: Things are about as good as can be expected. The GVH left my gut and moved to my lungs. It got pretty bad there for a bit and I spent a few days in the hospital. My lungs took a bit of a permanent hit and I probably won't ever run a marathon, but with the help of some high dose steroids I'm breathing pretty comfortably now. I'm well enough to work at least and well enough to enjoy a trip to Peru. Beth and I were able to go paragliding, take in some Peruvian cuisine, and have a wonderful time on the beautiful Pacific coast. My lung capacity precluded a trip to Machu Pichu but it was a blast regardless. We also celebrated a year of marriage about a month and a half ago. Beth also completed her first year of teaching and is enjoying her first summer vacation!
Purpose/Ministry: A fair amount on this front as well. Beth and I completed a course at our church to identify our spiritual gifts, talents, and heart tendencies. Ultimately, we felt God's leading to start a hospital ministry directed toward helping patients and their families deal with the adjustment of serious illness. On the most basic level, we want to provide Christian hospitality and support, especially to folks traveling to Rochester from afar for care. We also want to provide spiritual direction and understanding as much as one might desire this. We are approaching it humbly and with willing hearts; we feel God has given us a lot to draw on here. I will try to post updates related to this ministry that will be encouraging. We're calling it "Hospital-I.T.Y." (Intent on Trusting You).
Okay, that's the skinny. Keep posted, friends.
Work/Research: A lot to report here. I'm starting to find my groove in health services research. I mostly focus on figuring out ways to make healthcare make more sense. My unit works on erasing the disconnect between patients and their clinicians. I try to make health fit the goals of the patient and empower patients to accept nothing less. This means I study a lot of things, but especially the way patients and clinicians communicate. I'm looking at this critically right now in the context of communication with cancer physicians and studying the concept of "shared decision making." Beth and I just returned from a conference in Peru where I was able to sharpen my understanding of this better. You can watch some great keynotes about this here: http://isdm2013.org/video-archive/
My mentor, @vmontori, is promoting a concept called "minimally disruptive medicine." I will be blogging about that some here...and some here: http://minimallydisruptivemedicine.org/ You can also follow my musings on this and other things on twitter @aaronleppinmd I start my Master's classes officially next week.
Life/Health: Things are about as good as can be expected. The GVH left my gut and moved to my lungs. It got pretty bad there for a bit and I spent a few days in the hospital. My lungs took a bit of a permanent hit and I probably won't ever run a marathon, but with the help of some high dose steroids I'm breathing pretty comfortably now. I'm well enough to work at least and well enough to enjoy a trip to Peru. Beth and I were able to go paragliding, take in some Peruvian cuisine, and have a wonderful time on the beautiful Pacific coast. My lung capacity precluded a trip to Machu Pichu but it was a blast regardless. We also celebrated a year of marriage about a month and a half ago. Beth also completed her first year of teaching and is enjoying her first summer vacation!
Purpose/Ministry: A fair amount on this front as well. Beth and I completed a course at our church to identify our spiritual gifts, talents, and heart tendencies. Ultimately, we felt God's leading to start a hospital ministry directed toward helping patients and their families deal with the adjustment of serious illness. On the most basic level, we want to provide Christian hospitality and support, especially to folks traveling to Rochester from afar for care. We also want to provide spiritual direction and understanding as much as one might desire this. We are approaching it humbly and with willing hearts; we feel God has given us a lot to draw on here. I will try to post updates related to this ministry that will be encouraging. We're calling it "Hospital-I.T.Y." (Intent on Trusting You).
Okay, that's the skinny. Keep posted, friends.
Sunday, June 30, 2013
Back in the Saddle
Okay...it's been like...forever.
I'm going to get back into this. I need to. I have to develop my writing portfolio and I need a place to store my thoughts anyway.
You can catch me on twitter too...that's right...I'm going all in @aaronleppinmd
It turns out a social media presence is important for my career path and what-not. I need to be able to pump my research and communicate my agenda effectively. I'll be doing some of that here, or at least redirecting you to relevant blogs.
Will try to get updates out soon (although this is a busy time for me) related to my health, my job, and what God has been teaching me. Suffice is to say that things are good on all fronts.
All for now.
Aaron
I'm going to get back into this. I need to. I have to develop my writing portfolio and I need a place to store my thoughts anyway.
You can catch me on twitter too...that's right...I'm going all in @aaronleppinmd
It turns out a social media presence is important for my career path and what-not. I need to be able to pump my research and communicate my agenda effectively. I'll be doing some of that here, or at least redirecting you to relevant blogs.
Will try to get updates out soon (although this is a busy time for me) related to my health, my job, and what God has been teaching me. Suffice is to say that things are good on all fronts.
All for now.
Aaron
Thursday, March 14, 2013
No News is Good News
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
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
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.
Subscribe to:
Posts (Atom)