I think it's fair to suggest that very few people in the history of crappy kidneys have experienced a more enjoyable monthly checkup than I had last week at the DaVita clinic in Urbana-Champaign. Not only are all of my most important biological markers (phosphorus, calcium, protein and the like) at or above their recommended levels – "You are doing great," smiled my nephrologist, Dr. Attia – but my ego also received a major booster shot.
No fewer than five employees at the DaVita location, including the regional director herself, Ellie Suhl, took time out of their busy Friday to stop by my examination room to meet "the man who writes the blog" and compliment me on the quality of the work and for bringing attention to kidney disease and the outstanding work DaVita does in patient care. One woman said she especially giggled at my description of Diane King, my angelic dialysis nurse, as "Pollyanna," which meant that she not only really read the blog, she also had reader retention!
Now, this means two things:
(a) Many more people than you and me are reading these blatherings, to my great surprise, and
(b) I'm going to have to stop cussing in this blog and take it much more seriously every time out. After all, ladies are watching!
One nice added attraction of my appointment was being able to tell Ms. Suhl and several other people what I'm telling you now: DaVita's corporate marketing department in southern California somehow got wind of "Just Kidneying," and a delightful young woman interviewed me last week for a potential feature story in DaVita's national magazine!
Amazing. Life is a funny ol' dog, ain't it? Thirty-five years spent writing about other people in magazines national and local, and the first national article ever done on me comes as a result of renal failure.
Why, I could become the King of Kidneys! The Dean of Dialysis!
Saturday, January 23, 2010
Thursday, January 21, 2010
A Moment In Time on a Winter's Night
A few weeks ago Karen and I had occasion to drive down the street and past the modern brick building where my DaVita dialysis clinic is housed. I didn't think my grumble was audible, but wives hear everything.
"What's wrong?" she asked.
"Oh, I don't know," I said, the softness of my voice surprising even me. "I'm just thinking about DaVita." More likely, I was thinking about the specter of yet another training session in my immediate future, this one to learn how to move from manual at-home Peritoneal Dialysis to a "cycler," an intricate, elaborate machine that will do much of the kidney assist work for me over an eight-hour period.
"What does DaVita mean to you?"
Long silence. "Weakness. Sickness. Total change of life. Mortality." Without even realizing it, I had lapsed into a ripple of depression.
"I choose not to think of it that way," Karen replied. "I prefer to think of information. And hope.
"And life."
She looked at me, the way your spouse looks at you when she or he realizes they've just created a memory. She reached over and touched my hand.
We drove on into the dark night, but the streetlights seemed to glow a little brighter.
"What's wrong?" she asked.
"Oh, I don't know," I said, the softness of my voice surprising even me. "I'm just thinking about DaVita." More likely, I was thinking about the specter of yet another training session in my immediate future, this one to learn how to move from manual at-home Peritoneal Dialysis to a "cycler," an intricate, elaborate machine that will do much of the kidney assist work for me over an eight-hour period.
"What does DaVita mean to you?"
Long silence. "Weakness. Sickness. Total change of life. Mortality." Without even realizing it, I had lapsed into a ripple of depression.
"I choose not to think of it that way," Karen replied. "I prefer to think of information. And hope.
"And life."
She looked at me, the way your spouse looks at you when she or he realizes they've just created a memory. She reached over and touched my hand.
We drove on into the dark night, but the streetlights seemed to glow a little brighter.
Moving Around the Block
I have been away from this page, my beloved little kidney khronicle, for nearly a month now. There is no way I ever anticipated being gone so long. It wasn't because I grew lazy, or lost interest in the subject matter. I've just been battling through a severe case of writer's block.
Writers understand the effects of this horrible malady, and know that they are rarely pretty. No one can say exactly what brings on the dreadful condition, but in this case I have my suspicions.
A full week away from my trusty MacBook Pro last month for dialysis "boot camp" training at the DaVita clinic in Decatur, IL, was followed almost immediately by the holiday season. My sister-in-law, Julie, her husband Greg and their three kids (two children and a newborn – 2.5 kids?) came here for Christmas and, well, who wants to write when there are 10 other people frolicking merrily and celebrating family ties in your house?
Who could write, for that matter?
On top of that, the feature story I was writing on that incredibly nice Detroit philanthropist Doreen Hermelin, the lady who made me the tuna fish sandwich (see "Doreen," Nov. 6, and "Rootlessness," Nov. 9), wasn't going well. It turns out she didn't want a story written about her in the first place, so she called repeatedly to check on the status of the article and remind me to keep the focus on her charitable organizations, not on her personally. This is the reason you try to maintain a professional distance from the people you write about and try not to write about friends, so they aren't constantly looking over your shoulder chirping, "How's it going? How's it going?" This usually is not conducive to creative productivity.
Typically when an interview subject is reluctant to open up, my strategy is to talk to people who know the individual and have them say glowing things about him or her. But I also have a personal policy that if I talk to a person for a story, I must find a way to include a quote from them in the article; otherwise they may feel their time was wasted. In Mrs. Hermelin's case, there were so many people who had such interesting insights to share that trying to squeeze them all into the feature, along with background on Mrs. Hermelin as well as details about her charitable causes – oh, it all just became a hot mess.
Sweating over that story delayed my work on other deadline assignments, and in order to call yourself a professional writer you must actually finish an article every now and then and get paid for doing so. An old friend of mine, a writer of mystery novels, once told me the easiest way to overcome writer's block is "by applying ass to chair." In other words, just sit down and start writing something. Anything. But that's easier said than penned. Writing may be just like riding a bicycle, especially when you do it for a living, but even Lance Armstrong occasionally loses his brakes or blows a tire.
I remember a second baseman for the Los Angeles Dodgers named Steve Sax who eventually left baseball because he lost the ability to throw the ball 50 feet from his position to first base. It happens. Who knows why blocks form or why they disappear, but mine appears to have vanished as suddenly as it arrived. Good thing, too, because so much has happened since last we communicated and I've got a lot to share with you. Can't wait to start.
Nice to be back.
Writers understand the effects of this horrible malady, and know that they are rarely pretty. No one can say exactly what brings on the dreadful condition, but in this case I have my suspicions.
A full week away from my trusty MacBook Pro last month for dialysis "boot camp" training at the DaVita clinic in Decatur, IL, was followed almost immediately by the holiday season. My sister-in-law, Julie, her husband Greg and their three kids (two children and a newborn – 2.5 kids?) came here for Christmas and, well, who wants to write when there are 10 other people frolicking merrily and celebrating family ties in your house?
Who could write, for that matter?
On top of that, the feature story I was writing on that incredibly nice Detroit philanthropist Doreen Hermelin, the lady who made me the tuna fish sandwich (see "Doreen," Nov. 6, and "Rootlessness," Nov. 9), wasn't going well. It turns out she didn't want a story written about her in the first place, so she called repeatedly to check on the status of the article and remind me to keep the focus on her charitable organizations, not on her personally. This is the reason you try to maintain a professional distance from the people you write about and try not to write about friends, so they aren't constantly looking over your shoulder chirping, "How's it going? How's it going?" This usually is not conducive to creative productivity.
Typically when an interview subject is reluctant to open up, my strategy is to talk to people who know the individual and have them say glowing things about him or her. But I also have a personal policy that if I talk to a person for a story, I must find a way to include a quote from them in the article; otherwise they may feel their time was wasted. In Mrs. Hermelin's case, there were so many people who had such interesting insights to share that trying to squeeze them all into the feature, along with background on Mrs. Hermelin as well as details about her charitable causes – oh, it all just became a hot mess.
Sweating over that story delayed my work on other deadline assignments, and in order to call yourself a professional writer you must actually finish an article every now and then and get paid for doing so. An old friend of mine, a writer of mystery novels, once told me the easiest way to overcome writer's block is "by applying ass to chair." In other words, just sit down and start writing something. Anything. But that's easier said than penned. Writing may be just like riding a bicycle, especially when you do it for a living, but even Lance Armstrong occasionally loses his brakes or blows a tire.
I remember a second baseman for the Los Angeles Dodgers named Steve Sax who eventually left baseball because he lost the ability to throw the ball 50 feet from his position to first base. It happens. Who knows why blocks form or why they disappear, but mine appears to have vanished as suddenly as it arrived. Good thing, too, because so much has happened since last we communicated and I've got a lot to share with you. Can't wait to start.
Nice to be back.
Monday, December 28, 2009
Dialysis Boot Camp
I've driven past DaVita dialysis centers ever since I can remember, but began eyeing them more warily once the diagnosis of my crappy kidneys was confirmed. I think I may even have started slowing down to take a closer look as I passed them. I liken it to driving by the cemetery where your plot is located: you know you're going to end up there eventually, but you're in no particular hurry to visit.
Nothing I imagined about what goes on inside those places, however, could have prepared me for the experience of what I lovingly term "Dialysis Boot Camp."
Because I chose the option of Peritoneal Dialysis (PD), which is self-administered at home instead of at a clinic, my DaVita nurse Diane King wanted to make absolutely certain I could perform the procedure on my own before giving her consent. So for the better part of an entire work week in December – from 9 a.m. to mid-afternoon Monday through Wednesday, a day off Thursday to stop my head from spinning from the overload of information and training, then a four-hour "final exam" Friday at our home – this sweet little woman who had guided me gently through the stages of my renal disease suddenly turned into a drill instructor. She became Sgt. Carter to my Gomer Pyle.
"I've been told I can be a little demanding in these sessions," Diane said softly on the first day. No kidding! It was like going to a job again! No, worse: It was like cramming for a master's degree in Dialysis in one week. She even gave quizzes!
Over and over again she drilled me on the steps involved in dispensing PD: Sanitizing the worktable; the seven essential items required to begin (bag of solution, thermometer, plastic clamps, mask, hand sanitizer, new end caps for my catheter, paper towels); inspecting the solution; preparing the bag; hand washing and sanitizing; connecting and disconnecting the bag of solution to my catheter.
We learned the difference between "sterile" and "clean." Every time I thought I was getting the hang of things, there were new details to absorb. My wife, Karen, and my mother-in-law, Linda, patiently sat through the entire ordeal with me. Whenever I felt as if my eyes were about to glaze over, I looked at Karen, who reassured me with her warm smile and compassionate eyes.
We created a "cheat sheet" so we can review the steps in case we forget something. And on "final exam" Friday, Diane visited our little house on the prairie, inspected the lighting, layout and area where the PD would be performed, and deemed us worthy to fly solo. I've been proud and happy to pass a lot of tests in my lifetime, but few that were actually a matter of life itself.
I can dialyze myself now, thank you. Let the cleansing process begin!
Nothing I imagined about what goes on inside those places, however, could have prepared me for the experience of what I lovingly term "Dialysis Boot Camp."
Because I chose the option of Peritoneal Dialysis (PD), which is self-administered at home instead of at a clinic, my DaVita nurse Diane King wanted to make absolutely certain I could perform the procedure on my own before giving her consent. So for the better part of an entire work week in December – from 9 a.m. to mid-afternoon Monday through Wednesday, a day off Thursday to stop my head from spinning from the overload of information and training, then a four-hour "final exam" Friday at our home – this sweet little woman who had guided me gently through the stages of my renal disease suddenly turned into a drill instructor. She became Sgt. Carter to my Gomer Pyle.
"I've been told I can be a little demanding in these sessions," Diane said softly on the first day. No kidding! It was like going to a job again! No, worse: It was like cramming for a master's degree in Dialysis in one week. She even gave quizzes!
Over and over again she drilled me on the steps involved in dispensing PD: Sanitizing the worktable; the seven essential items required to begin (bag of solution, thermometer, plastic clamps, mask, hand sanitizer, new end caps for my catheter, paper towels); inspecting the solution; preparing the bag; hand washing and sanitizing; connecting and disconnecting the bag of solution to my catheter.
We learned the difference between "sterile" and "clean." Every time I thought I was getting the hang of things, there were new details to absorb. My wife, Karen, and my mother-in-law, Linda, patiently sat through the entire ordeal with me. Whenever I felt as if my eyes were about to glaze over, I looked at Karen, who reassured me with her warm smile and compassionate eyes.
We created a "cheat sheet" so we can review the steps in case we forget something. And on "final exam" Friday, Diane visited our little house on the prairie, inspected the lighting, layout and area where the PD would be performed, and deemed us worthy to fly solo. I've been proud and happy to pass a lot of tests in my lifetime, but few that were actually a matter of life itself.
I can dialyze myself now, thank you. Let the cleansing process begin!
Friday, December 18, 2009
I'm Beautiful, Inside and Out
Recently Karen and I returned to Carle Hospital in Urbana, IL, for a followup visit with Dr. Michael Neuwirth, the brilliant surgeon who performed the catheter insertion for my dialysis. I know he must be brilliant because every health care professional I've met with since the operation – and I've met with a mess of 'em – refers to him and his work in hushed tones of reverence. That makes for one contented patient.
Actually, I didn't meet with Dr. Neuwirth in person (brilliant people are often busy, too), but with his physician's assistant, who asked to remain nameless here for professional reasons. Henceforth we will call her Unidentified Physician's Assistant, or UPA, which is not to be confused with "Yooper," the slang term for a native of Michigan's Upper Peninsula. Which, as it just so happened, is where the UPA was from.
The UPA was extremely pleased to see that, as she told us, my surgical wound showed no evidence of dehiscence, which from this point on will be our Word for the Day.
(de • his • cence, (de-HISS-cents), n.: a bursting or splitting along natural or sutured lines; a splitting open. Separation of the layers of a surgical wound. "We may have to suture him again, Al; the blood indicates his incision is showing signs of dehiscence.")
She didn't stop there, however. UPA went on to gush over how beautifully the edges of the incision were coming together, and that the healing process looked "awesome." By my count, she used the word "beautiful" or a variation seven times during our brief visit, along with "awesome," "perfect" and "excellent" once each.
Well, let me tell you, it's been a very long time since any person of the female persuasion looked at me and said "beautiful" that many times, even if it was in regards to the two-inch slit in my belly.
Leaving the hospital that day, I kept hearing the voice of Natalie Wood in West Side Story sounding in my head: "I feel pretty, oh so pretty, I feel pretty and witty...." UPA made me so proud, I could have just dehissed.
Actually, I didn't meet with Dr. Neuwirth in person (brilliant people are often busy, too), but with his physician's assistant, who asked to remain nameless here for professional reasons. Henceforth we will call her Unidentified Physician's Assistant, or UPA, which is not to be confused with "Yooper," the slang term for a native of Michigan's Upper Peninsula. Which, as it just so happened, is where the UPA was from.
The UPA was extremely pleased to see that, as she told us, my surgical wound showed no evidence of dehiscence, which from this point on will be our Word for the Day.
(de • his • cence, (de-HISS-cents), n.: a bursting or splitting along natural or sutured lines; a splitting open. Separation of the layers of a surgical wound. "We may have to suture him again, Al; the blood indicates his incision is showing signs of dehiscence.")
She didn't stop there, however. UPA went on to gush over how beautifully the edges of the incision were coming together, and that the healing process looked "awesome." By my count, she used the word "beautiful" or a variation seven times during our brief visit, along with "awesome," "perfect" and "excellent" once each.
Well, let me tell you, it's been a very long time since any person of the female persuasion looked at me and said "beautiful" that many times, even if it was in regards to the two-inch slit in my belly.
Leaving the hospital that day, I kept hearing the voice of Natalie Wood in West Side Story sounding in my head: "I feel pretty, oh so pretty, I feel pretty and witty...." UPA made me so proud, I could have just dehissed.
Saturday, December 12, 2009
The 1.5, 2.5 and 4.25 Percent Solutions
Earlier this week – even earlier than promised, actually, and how often does that happen these days? – a blue-and-white Baxter delivery truck about the length of Toledo pulled up in front of our little house on the prairie and dropped off my first supply of "Dianeal, Low Calcium, Peritoneal Dialysis Solution with 1.5% Dextrose" (let's just call that PDS for short) I'll be using for my manual daily dialysis exchanges that begin this month.
Baxter, I'm sure you don't know, is "a worldwide leader in providing lifesaving products and services for patients who suffer from kidney failure." I know this because Baxter told me so on its self-produced instructional video, "Going Home With Confidence." The Baxter delivery driver could not have been friendlier or more informative, which is important when some burly trucker you've never seen before wheels into your house with 13 cases of sugar-water-in-a-bag.
What 13 cases of dialysis solution looks like in a corner.
Each case contains a half-dozen bags of fluid, 2,000 millileters apiece, about the length of a football and as heavy as a half-gallon of milk. Every bag is encased in a larger plastic bag for protection and includes its own pair of connecting tubes (one for fluid in, one for fluid out) and drainage bag for the liquid's final resting place. It's a modern miracle of in-home medical technology.
Not all the bags are mixed with 1.5 percent dextrose. Some have 2.5 percent, others as high as 4.25 percent. My nephrologist, Dr. Attia, will determine which concentration is best for me as my condition changes. As the manual exchange program calls for pouring in and draining out four of these puppies a day, the supply is likely to disappear quickly.
The bag inside the bag.
Here's the kicker for me: the DaVita office arranged for the first home delivery, but I have to schedule every subsequent shipment myself. That will mean calling Baxter at least two weeks before I need supplies, making an order and keeping a running inventory so I know what I have in stock and what I need to request. Any lawyer, accountant or tax preparer I've ever had in my life is laughing uncontrollably right now over the idea of me keeping accurate records of anything.
I think the empty bag isn't the only thing that will be draining.
Baxter, I'm sure you don't know, is "a worldwide leader in providing lifesaving products and services for patients who suffer from kidney failure." I know this because Baxter told me so on its self-produced instructional video, "Going Home With Confidence." The Baxter delivery driver could not have been friendlier or more informative, which is important when some burly trucker you've never seen before wheels into your house with 13 cases of sugar-water-in-a-bag.
(The video says to make sure you check the driver's identification before letting him into your home; I think an 80-foot tractor trailer pulling up to your front door with "BAXTER" emblazoned across the side would be a pretty strong hint that the guy's legit.)
And yes, I said 13 cases of solution – which, since my dialysis cycle is beginning in the middle of a month, is only a partial shipment! The driver told me a typical delivery in months to come should average as many as 30 cases! Thankfully, we have a small nook just inside our front door and next to the fireplace that I cleared out beforehand to make room. But imagine trying to find space in your place to accommodate 30 new packing boxes of anything.
Each case contains a half-dozen bags of fluid, 2,000 millileters apiece, about the length of a football and as heavy as a half-gallon of milk. Every bag is encased in a larger plastic bag for protection and includes its own pair of connecting tubes (one for fluid in, one for fluid out) and drainage bag for the liquid's final resting place. It's a modern miracle of in-home medical technology.
Not all the bags are mixed with 1.5 percent dextrose. Some have 2.5 percent, others as high as 4.25 percent. My nephrologist, Dr. Attia, will determine which concentration is best for me as my condition changes. As the manual exchange program calls for pouring in and draining out four of these puppies a day, the supply is likely to disappear quickly.
Here's the kicker for me: the DaVita office arranged for the first home delivery, but I have to schedule every subsequent shipment myself. That will mean calling Baxter at least two weeks before I need supplies, making an order and keeping a running inventory so I know what I have in stock and what I need to request. Any lawyer, accountant or tax preparer I've ever had in my life is laughing uncontrollably right now over the idea of me keeping accurate records of anything.
I think the empty bag isn't the only thing that will be draining.
Tuesday, December 8, 2009
A Precious Gift, A Sacred Trust
On Monday I had a long introductory phone conversation with Diane Herche (pronounced Herky), the dialysis coordinator for our insurance carrier, Health Alliance. (And may I say here that I think Herche is one of the coolest surnames I've heard in an eon. I'm strongly considering changing my name to Jimmy Herche.) She is not to be confused with my dialysis nurse at DaVita, Diane King. I'm beginning to think everybody in the kidney game has to be named Diane.
My wonderful wife, Karen, has done a phenomenal job taking the point to coordinate our coverage, satisfy co-pays and ask questions of the appropriate people when we get lost in the insurance jungle, but this was my first time actually speaking to our carrier's representative voice to voice.
Diane is an extremely engaging woman and our conversation soon danced into a variety of kidney-transplant related subjects. With Health Alliance's approval, last week I called Barnes-Jewish Hospital in St. Louis, one of the Midwest's leading transplant centers, and said, "I want to be considered for a kidney transplant, please." (I was told I had to call Barnes personally and make my request with precisely those words in order for their evaluation process to begin. It's like a game show: "Oh, we're sorry, Mr. McFarlin, you didn't phrase your application in the proper form. What do we have as his consolation prize, Johnny? A can of kidney beans! Thanks for playing! And who's our next lucky recipient?")
We have to make sure that Health Alliance is on board with our decisions at every turn. As I explained to Diane, the reason I had to remove myself from the transplant waiting list in Michigan is that my previous carrier refused to pay for the monthly blood screenings that are required to remain under consideration for a donor organ once I moved out of state, and the cost was too prohibitive – more than $300 a month, as I recall – to foot the bill ourselves.
I told her I wanted to ensure that Health Alliance would pay for the blood tests, do whatever they could to help me get my accrued time on the Michigan waiting list transferred to Illinois and approve all the costs of a potential transplant at Barnes even though the hospital is out of state. Her confident voice and obvious experience with the system quickly reassured me that everything would be all right whenever a donor kidney becomes available – possibly within 1-2 years, as opposed to the 4-5 years estimated for Michigan. Amazing how states without motorcycle helmet laws have shorter waiting periods!
What struck me most about our telephone chat, however, was Diane's closing comments about aftercare following a transplant. She stressed that everything I'm doing now – taking my medications religiously, limiting my diet, keeping regular appointments with my specialists – becomes even more imperative after I receive a new kidney.
After all, she noted, while a replacement kidney isn't a cure for kidney disease, it is a gift of life and improved health. They could have given the kidney to any suitable donor, she said; when my time comes at the top of the list, my transplant team wants to know that they've made the right decision and I will respect and maintain the organ I receive.
I never thought about the process quite that way before. When I'm chosen – if I'm chosen – a lot of people will be expecting me to protect their investment in my health. Part of another person's body is going to be entrusted inside me to prolong my life. It's an honor, a privilege – and one huge responsibility.
My wonderful wife, Karen, has done a phenomenal job taking the point to coordinate our coverage, satisfy co-pays and ask questions of the appropriate people when we get lost in the insurance jungle, but this was my first time actually speaking to our carrier's representative voice to voice.
Diane is an extremely engaging woman and our conversation soon danced into a variety of kidney-transplant related subjects. With Health Alliance's approval, last week I called Barnes-Jewish Hospital in St. Louis, one of the Midwest's leading transplant centers, and said, "I want to be considered for a kidney transplant, please." (I was told I had to call Barnes personally and make my request with precisely those words in order for their evaluation process to begin. It's like a game show: "Oh, we're sorry, Mr. McFarlin, you didn't phrase your application in the proper form. What do we have as his consolation prize, Johnny? A can of kidney beans! Thanks for playing! And who's our next lucky recipient?")
We have to make sure that Health Alliance is on board with our decisions at every turn. As I explained to Diane, the reason I had to remove myself from the transplant waiting list in Michigan is that my previous carrier refused to pay for the monthly blood screenings that are required to remain under consideration for a donor organ once I moved out of state, and the cost was too prohibitive – more than $300 a month, as I recall – to foot the bill ourselves.
I told her I wanted to ensure that Health Alliance would pay for the blood tests, do whatever they could to help me get my accrued time on the Michigan waiting list transferred to Illinois and approve all the costs of a potential transplant at Barnes even though the hospital is out of state. Her confident voice and obvious experience with the system quickly reassured me that everything would be all right whenever a donor kidney becomes available – possibly within 1-2 years, as opposed to the 4-5 years estimated for Michigan. Amazing how states without motorcycle helmet laws have shorter waiting periods!
What struck me most about our telephone chat, however, was Diane's closing comments about aftercare following a transplant. She stressed that everything I'm doing now – taking my medications religiously, limiting my diet, keeping regular appointments with my specialists – becomes even more imperative after I receive a new kidney.
After all, she noted, while a replacement kidney isn't a cure for kidney disease, it is a gift of life and improved health. They could have given the kidney to any suitable donor, she said; when my time comes at the top of the list, my transplant team wants to know that they've made the right decision and I will respect and maintain the organ I receive.
I never thought about the process quite that way before. When I'm chosen – if I'm chosen – a lot of people will be expecting me to protect their investment in my health. Part of another person's body is going to be entrusted inside me to prolong my life. It's an honor, a privilege – and one huge responsibility.
Subscribe to:
Posts (Atom)