In all the recent kidney konfusion, I nearly forgot to tell you: Today I am an award-winning blogateer.
You are looking at – OK, to be perfectly accurate, you're reading – the recipient of the 2011 Robert Felter Memorial Award from the Renal Network, Inc., given to "honor individual renal patients for their contribution to fellow patients and their families through service, outreach and education." Impressive, no?
I'd never heard of it before either.
Actually, it was the social worker at my DaVita dialysis clinic in Decatur, Ill., Theresa, who knew of the award and encouraged me to fill out a nominating form.
She knew of my other kidney educational endeavors: working as a contributing editor on the "Live Now: Rethink Kidney Disease" website hosted by Baxter, the company that makes my dialysis supplies; public speaking engagements on behalf of Peritoneal Dialysis for the Baxter corporation and in front of the Michigan Legislature; joining Baxter's patient advisory board, speaking to dialysis patients one-on-one at clinics in Michigan and Illinois. But if you ask me, it was far and away this goofy, occasionally informative blog that helped to put my entry over the top.
If you subscribe to JK, read it regularly or have ever read it before, thank you. I appreciate you more than you could ever imagine.
The late and memorialized Robert Lee Felter, who died in 2002, was a kidney patient himself and is described by the Renal Network as "a champion for dialysis and transplant patients, and a guiding force for patient-centered activities." To answer The Wife's (and possibly your) immediate first question, no, there is no monetary award involved. However, as the Felter winner, I do receive an all-expenses-paid trip to an upcoming national convention that focuses on dialysis or renal research.
Ah, there's the rub. After extensive (and I do mean extensive) investigation, the best convention I could find for the remainder of 2011 was "Bridging the Future of Kidney Care," the 38th annual gathering of the American Association of Kidney Patients.
It's taking place Aug. 26-28 at the Peabody Hotel in Little Rock, Ark.
That's Arkansas. In August.
Second prize: A free weekend in Hell.
But hey, the horse is a gift. Who am I to check its choppers?
I will show up in Little Rock with the enthusiasm of a female intern meeting Bill Clinton, and we'll play it as it lays. So to speak.
And whatever befalls, rest assured I'll tell you all about it.
In this award-winning blog, of course.
Tuesday, June 28, 2011
Tuesday, June 21, 2011
Just Kidneying – For Real
The chief transplant surgeon swept into my room at Barnes-Jewish Hospital in St. Louis, seemingly pulling the entire medical staff of the hospital behind him. lnterns, his surgical team, associates, student fellows – it was the "white coat swarm" that my nurse, Renee, warned me would be coming into my room to stare at me for a while.
But they were more than an hour late in their appointed rounds, which should have told me something.
The surgeon fixed his eyes and set his jaw. "I'm afraid it's bad news," he said solemnly.
Another doctor proceeded to give us the details: the kidney that had been designated for me, the one that prompted Karen and me to toss our clothes in a bag and race 200 miles to St. Louis at a moment's notice on a Sunday afternoon, the one that kept me overnight in a hospital though I wasn't sick, the one that necessitated a chest X-ray, EKG, blood screenings and a battery of other tests to make sure I was healthy enough to receive it – that kidney wasn't coming.
In keeping with the arcane rules and protocols of organ donation, at the last nanosecond another hospital in the region stepped up to claim the kidney for a patient whose condition was far more dire than mine. The doctor said a lot of other things, most of them apologetic, but I became lost in my own thoughts after that. The next thing I remember hearing was the chief surgeon saying, "You can get dressed now," before the swarm drifted back out of my room.
That's it. False alarm. So sorry. Just kidneying.
How ironic.
I was disappointed, of course, and very weary after a night of being poked, prodded and roused from my sleep every few hours on those wonderful hospital beds. The drive back from St. Louis seemed to take days. But I was neither upset nor discouraged. This revived relationship I have with Jesus Christ has given me an amazing sense of calm in matters such as these. It must be what the Bible means by "peace that passes all understanding." God knew this wasn't the right kidney for me, even though all the outward signs suggested it. When the perfect organ for me comes around, He will handle all the paperwork. God is in complete control.
What this experience showed me was the incredible fragility of this organ donation process. If an organ becomes available and if it's undamaged; if it's an acceptable blood and tissue match; if the potential recipient can get to the hospital in time; if he or she doesn't have a low-grade fever, undetected infection or some other physical impediment to surgery. Even then, there are no guarantees the transplant will actually take place. So many things have to go exactly right. It's a life lottery.
What saddens me most is not that I missed out on the transplant. It's that so many other people, who had offered up so many prayers, positive thoughts and good wishes, seemed more disappointed than I was. I'm told my father-in-law cried openly when he heard a matching kidney had been found. Larry is my personal version of John Wayne; he's not a cry-at-the-drop-of-a-puppy kind of guy.
My wife's BFF took the day off from work and drove to St. Louis to be at the bedside with Karen. My in-laws showed up to lend their support, bringing the twins with them. Madison, who really is becoming a talented young artist, used the trip to create paintings to adorn my hospital room, including one with a Bible verse she selected herself. We taped it to the front door of my room.
The passage is from Psalms 73. It reads, "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; He is mine forever."
My pastor, Tony Caffey, and his wife, Sanja, drove in from distant Arthur, Ill., arriving about 90 seconds after we heard the unfortunate news. The gang truly was all here, and ready to rejoice. Their joy, alas, was short-circuited. So we all gathered in a circle and prayed instead.
So many of you put forward so much love, prayer and support on my behalf, I could actually feel it in my room at Barnes-Jewish. It's a phenomenal feeling to be cared about that deeply. Thank you. Thank you so very much.
The good news is, this call means I am at the top of the transplant list. I was told there have been instances where patients have been called in four or five times before they actually receive the transplant. (Oh, Lord, tell me that's not going to happen!)
I'm going to keep praying. You keep praying, too. Together we'll get through all this. And someday, after I've had a healthy replacement kidney for years and am doing better than any of us thought possible, we'll look back on these days and laughhhhh.
But they were more than an hour late in their appointed rounds, which should have told me something.
The surgeon fixed his eyes and set his jaw. "I'm afraid it's bad news," he said solemnly.
Another doctor proceeded to give us the details: the kidney that had been designated for me, the one that prompted Karen and me to toss our clothes in a bag and race 200 miles to St. Louis at a moment's notice on a Sunday afternoon, the one that kept me overnight in a hospital though I wasn't sick, the one that necessitated a chest X-ray, EKG, blood screenings and a battery of other tests to make sure I was healthy enough to receive it – that kidney wasn't coming.
In keeping with the arcane rules and protocols of organ donation, at the last nanosecond another hospital in the region stepped up to claim the kidney for a patient whose condition was far more dire than mine. The doctor said a lot of other things, most of them apologetic, but I became lost in my own thoughts after that. The next thing I remember hearing was the chief surgeon saying, "You can get dressed now," before the swarm drifted back out of my room.
That's it. False alarm. So sorry. Just kidneying.
How ironic.
I was disappointed, of course, and very weary after a night of being poked, prodded and roused from my sleep every few hours on those wonderful hospital beds. The drive back from St. Louis seemed to take days. But I was neither upset nor discouraged. This revived relationship I have with Jesus Christ has given me an amazing sense of calm in matters such as these. It must be what the Bible means by "peace that passes all understanding." God knew this wasn't the right kidney for me, even though all the outward signs suggested it. When the perfect organ for me comes around, He will handle all the paperwork. God is in complete control.
What this experience showed me was the incredible fragility of this organ donation process. If an organ becomes available and if it's undamaged; if it's an acceptable blood and tissue match; if the potential recipient can get to the hospital in time; if he or she doesn't have a low-grade fever, undetected infection or some other physical impediment to surgery. Even then, there are no guarantees the transplant will actually take place. So many things have to go exactly right. It's a life lottery.
What saddens me most is not that I missed out on the transplant. It's that so many other people, who had offered up so many prayers, positive thoughts and good wishes, seemed more disappointed than I was. I'm told my father-in-law cried openly when he heard a matching kidney had been found. Larry is my personal version of John Wayne; he's not a cry-at-the-drop-of-a-puppy kind of guy.
My wife's BFF took the day off from work and drove to St. Louis to be at the bedside with Karen. My in-laws showed up to lend their support, bringing the twins with them. Madison, who really is becoming a talented young artist, used the trip to create paintings to adorn my hospital room, including one with a Bible verse she selected herself. We taped it to the front door of my room.
My pastor, Tony Caffey, and his wife, Sanja, drove in from distant Arthur, Ill., arriving about 90 seconds after we heard the unfortunate news. The gang truly was all here, and ready to rejoice. Their joy, alas, was short-circuited. So we all gathered in a circle and prayed instead.
So many of you put forward so much love, prayer and support on my behalf, I could actually feel it in my room at Barnes-Jewish. It's a phenomenal feeling to be cared about that deeply. Thank you. Thank you so very much.
The good news is, this call means I am at the top of the transplant list. I was told there have been instances where patients have been called in four or five times before they actually receive the transplant. (Oh, Lord, tell me that's not going to happen!)
I'm going to keep praying. You keep praying, too. Together we'll get through all this. And someday, after I've had a healthy replacement kidney for years and am doing better than any of us thought possible, we'll look back on these days and laughhhhh.
Sunday, June 19, 2011
The Kidney Call Comes
I wasn't ready.
My best friend since kindergarten, Walker Parmelee, told me not long ago that no one is ever ready when the call comes that potentially could change the rest of your life. It's like the Bible says in Matthew 25, "Watch therefore, for ye know neither the day nor the hour...."
Our day was Sunday, June 19. Father's Day. Four days after my 5*th birthday. The same week the State of Illinois was ordered to extend, rather than totally revise, existing health care benefits for its employees – including Karen, whose medical coverage I am under. I should have known this would be the time God might choose.
The hour was 2:30 p.m., after Karen and I had returned home from church at Harvest Bible Chapel. Ironically, my phone rang just as I was sitting down to a delightful home-cooked lunch, and I opted to let it go to voicemail.
Moments later, it rang again. Now I'm getting a bit peevish. "Which one of my idiot friends can't figure out that if I don't pick up the phone, I don't want to talk right now?" I carped, my thoughts in the form of a mutter.
The ringing eventually ended on that call, too. Then Karen's cell phone sprang to life. She at least had the motivation to get up and look at the number.
"Do we know anyone in the 314 area code?" she asked.
"That's St. Louis," I said. Home of Barnes-Jewish Hospital, my kidney transplant headquarters.
My blood ran cold.
She put the phone on speaker and we talked to a very nice transplant coordinator named Trish. She said a potential kidney donor match had been located for me: a 54-year-old woman (whoo-HOO! Younger than me!) who died within the past 24 hours and is a solid blood and tissue match.
That's the way it often is in the transplant biz, tragically. Someone's got to die for the gift of life to be bestowed.
The hangup in this case: no one knows anything about the lady's medical history.
Surgeons will perform a biopsy on the kidney to see if there's anything wrong with it internally, but until the results of that test come back and doctors are satisfied that it's damage- and disease-free, we're in a bit of limbo. What's more, because of the questionable origin of the organ, I'm told I can say "No, I don't think so" right until they wheel me into the OR without penalty of losing my place on the donor list.
Pressure? What pressure?
It isn't that I'm not thrilled about the prospect of a kidney transplant, although on the three-hour drive to St. Louis I could feel myself growing quiet and sullen. The closer we got to the Gateway Arch, the harder it was for me to catch my breath. At one point I thought I was hyperventilating.
It's hard to explain. As much as I try to put my faith in God for all things, I think it was just the fear of the unknown that was sending my mind into the funk tank. I'm doing all right on Peritoneal Dialysis – better than all right, actually, I'm doing great – and even though I may not stay that way forever and a transplant is far and away the best alternative long term, I always have had a very tough time adjusting to change.
It's amazing to me how many questions and "what ifs," serious and silly, come to mind at a time like this:
What if there are complications in the surgery?
What if my body rejects this lady's little kidney?
Will I miss dialysis?
What will I do with all that extra time and medical supplies once I'm off dialysis?
How will I respond to the anti-rejection drugs?
Will I ever be able to eat sushi, or raw anything, again for fear of infection?
Will I have to wear a mask in public?
You can drive yourself cuckoo-for-Cocoa-Puffs if you let your mind run free with all those "what ifs." Enough already. I'm much calmer now. Once we got to the hospital, got checked in and they started running diagnostic tests on me, I felt much better. Whatever's going to happen now is going to happen. It never was in my hands in the first place.
Right after my EKG was completed, out of the blue, a member of the church I belong to 180 miles away strolled into my hospital room. Dick Elder's wife, Kathy, is also a patient in this massive medical complex – and, as it turns out, in the room one floor above mine.
Small world, schmall world: you'll never convince me that's a coincidence.
Then the hospital technician, as she was drawing my blood, suddenly began softly praying aloud for my health and safety. "If it's for you, it's going to happen," she said, laying a hand on my wrist. "The Lord knows what's best for you. We ask you, dear Lord, to put this man's health in your hands."
Powerful stuff, this kidney transplant. Amen.
My best friend since kindergarten, Walker Parmelee, told me not long ago that no one is ever ready when the call comes that potentially could change the rest of your life. It's like the Bible says in Matthew 25, "Watch therefore, for ye know neither the day nor the hour...."
Our day was Sunday, June 19. Father's Day. Four days after my 5*th birthday. The same week the State of Illinois was ordered to extend, rather than totally revise, existing health care benefits for its employees – including Karen, whose medical coverage I am under. I should have known this would be the time God might choose.
The hour was 2:30 p.m., after Karen and I had returned home from church at Harvest Bible Chapel. Ironically, my phone rang just as I was sitting down to a delightful home-cooked lunch, and I opted to let it go to voicemail.
Moments later, it rang again. Now I'm getting a bit peevish. "Which one of my idiot friends can't figure out that if I don't pick up the phone, I don't want to talk right now?" I carped, my thoughts in the form of a mutter.
The ringing eventually ended on that call, too. Then Karen's cell phone sprang to life. She at least had the motivation to get up and look at the number.
"Do we know anyone in the 314 area code?" she asked.
"That's St. Louis," I said. Home of Barnes-Jewish Hospital, my kidney transplant headquarters.
My blood ran cold.
She put the phone on speaker and we talked to a very nice transplant coordinator named Trish. She said a potential kidney donor match had been located for me: a 54-year-old woman (whoo-HOO! Younger than me!) who died within the past 24 hours and is a solid blood and tissue match.
That's the way it often is in the transplant biz, tragically. Someone's got to die for the gift of life to be bestowed.
The hangup in this case: no one knows anything about the lady's medical history.
Surgeons will perform a biopsy on the kidney to see if there's anything wrong with it internally, but until the results of that test come back and doctors are satisfied that it's damage- and disease-free, we're in a bit of limbo. What's more, because of the questionable origin of the organ, I'm told I can say "No, I don't think so" right until they wheel me into the OR without penalty of losing my place on the donor list.
Pressure? What pressure?
It isn't that I'm not thrilled about the prospect of a kidney transplant, although on the three-hour drive to St. Louis I could feel myself growing quiet and sullen. The closer we got to the Gateway Arch, the harder it was for me to catch my breath. At one point I thought I was hyperventilating.
It's hard to explain. As much as I try to put my faith in God for all things, I think it was just the fear of the unknown that was sending my mind into the funk tank. I'm doing all right on Peritoneal Dialysis – better than all right, actually, I'm doing great – and even though I may not stay that way forever and a transplant is far and away the best alternative long term, I always have had a very tough time adjusting to change.
It's amazing to me how many questions and "what ifs," serious and silly, come to mind at a time like this:
What if there are complications in the surgery?
What if my body rejects this lady's little kidney?
Will I miss dialysis?
What will I do with all that extra time and medical supplies once I'm off dialysis?
How will I respond to the anti-rejection drugs?
Will I ever be able to eat sushi, or raw anything, again for fear of infection?
Will I have to wear a mask in public?
You can drive yourself cuckoo-for-Cocoa-Puffs if you let your mind run free with all those "what ifs." Enough already. I'm much calmer now. Once we got to the hospital, got checked in and they started running diagnostic tests on me, I felt much better. Whatever's going to happen now is going to happen. It never was in my hands in the first place.
Right after my EKG was completed, out of the blue, a member of the church I belong to 180 miles away strolled into my hospital room. Dick Elder's wife, Kathy, is also a patient in this massive medical complex – and, as it turns out, in the room one floor above mine.
Small world, schmall world: you'll never convince me that's a coincidence.
Then the hospital technician, as she was drawing my blood, suddenly began softly praying aloud for my health and safety. "If it's for you, it's going to happen," she said, laying a hand on my wrist. "The Lord knows what's best for you. We ask you, dear Lord, to put this man's health in your hands."
Powerful stuff, this kidney transplant. Amen.
Giving Me the Finger
WHAT THE HECK IS THIS?
Not long ago I woke up to find the ring finger of my right hand bent back like a brown "C," as if it was pointing back at me, or preparing to flick something away. Even worse, it was locked in that position. And it hurt! I grabbed it with my other hand and tried to straighten it out. After hearing a small but audible "click," it was back in its normal position.
Now it's happening to the same digit dozens of times each day. Since I use that finger, along with its nine close friends, to do important things like write, make money and deliver these messages to you, this is no minor inconvenience.
It's an incredibly weird feeling when a part of your body doesn't respond to your mental commands. When it locks, I stare at my finger and think, "Bend! BEND! I, your master, ORDER you to return to your regular place!"
Nuthin'.
Like I did when I learned I had kidney failure, my first move was to the World Wide Interweb to do some fast, intense medical research. What I have is actually quite common, Google tells me. O, fortunate me.
It's called "trigger finger," or stenosing tenosynovitis. We'll just stick with "trigger finger." And according to the American Academy of Orthopaedic Surgeons Web site, even with all the advances in modern medicine nobody seems to know exactly what causes it. Marvelous.
Here's what the orthopods do know:
• It happens when the flexor tendon, which controls the movement of your fingers and thumbs, becomes irritated or actually gets caught for a moment on a tiny nodule growing in the sheath that keeps the tendon in place.
• It is more common in women than men. (Lucky, lucky me.)
• It occurs most frequently in people between 40 and 60. (Check.)
• It is more common in people who have certain medical conditions, lilke rheumatoid arthritis or diabetes. (Wait a minute: I've got diabetes, too?)
(Oh, no. It's probably the kidney thing. Never mind.)
• It may occur after heavy hand use or activities that strain the hand. (You mean, like typing millions of words over a 35-year career?)
Fortunately, a woman at our church, Theresa Miller, is a well-known physical therapist in the area. Unfortunately, she couldn't hold out much hope.
There is no "cure" for stenosing tenosynovitis, Theresa told me, and the best treatments are rest, perhaps some heat, and anti-inflammatory medicines. Occasionally a doctor will inject a steroid medication DIRECTLY INTO THE FINGER to help relieve the pain. (I'll need a moment here.)
As a last resort, surgery may be recommended to prevent permanent stiffness. In any case, the options don't sound particularly sunny.
Karen has become very adept at massaging the sides of my finger in just the right places when it locks to ease it pack to full extension. Theresa suggested a special finger splint to aid in the resting process, and I'll likely pick one up the next time I'm near a medical supply outlet. So in the future, if you should read anything I write that suddenly starts missing all its "Ls" and "Os," it's probably because I'm trying to finish my w rk whi e wearing the sp int.
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