Just finished a big week on the kidney beat. On Tuesday I was in Waukegan, Ill., home of Baxter Healthcare, where I sit on the company's Patient Advisory Committee team (PACt), to attend one of our quarterly meetings. Then, as luck and good scheduling would have it, on Thursday I stopped in Chicago while on my way home to Champaign to make a presentation to the board of directors for the National Kidney Foundation of Illinois (NKFI).
Even more good timing: Karen, my angel of mercy, happened to have business in Chicago at the same time. So we used the once-grand, now-scruffy Blackstone Hotel in the Loop as our home base for the week. It even allowed Karen the opportunity to join me for the NKFI appearance.
At the Baxter confab, representatives from the company's various renal divisions come to our committee (numbering about 20 on this occasion) to get our reaction to proposed new products, changes to existing products, and to pick our brains about how we use Baxter's goods in the real world. These are scientists, corporate doctors and manufacturers who almost never come in contact with an actual breathing patient.
I've been sworn to secrecy about revealing details from these sessions under threat of slow, lingering death. The Baxter PR honchos get quite skittish knowing there's a former journalist in the room who has a blog read by people concerned with kidney matters. But I think I've been pretty good about keeping their confidences so far.
So far.
In this get-together we met Dr. Cory Sise, a nephrologist and leader on Baxter's medical team, who had her worst fear confirmed by the PACt people: Those product information sheets she and her people spend hours revising and rewording so they're completely accurate and useful?
Nobody reads them.
For me, the keenest insights from these meetings come not from the Baxter executives but from my fellow patients. On this trip, I learned that some people, in order to warm their bags of manual dialysis solution before inserting the fluid into their abdomens, actually stick the bags in the microwave! Yow! I guess if it starts boiling, you should take it out, eh?
The recommended method is to lay the bags on a heating pad so that they warm slowly and thoroughly. Problem is, if you forget and leave them on too long, it can have the same effect as nuking them. Imagine molten lava roaring through a catheter and filling your innards. Burn, baby, burn.
Hearing the other patients' startling admissions prompted me to confess my own preferred means of bag warming: hot water. I go to the bathroom, fill the sink and submerge the bag for three minutes or so. Slow, even warmth. I've learned over the years that the dialysis solution doesn't need to be piping hot; it just needs to be warmer than I am. Inserting liquid inside you that's too cold can be just as painful as solution that's scorching: Yow!
I was afraid to tell any health care professional about the hot water before, for fear they wouldn't approve. These meetings can be so liberating!
The NKFI board of directors retreat (no campfire songs or s'mores, much to my chagrin) was staged in the magnificent Merchandise Mart, and I was invited to give my first-person saga of living with chronic kidney disease and dialysis. Many thanks to Kate O'Connor, CEO of the Foundation, for extending the invitation, and to communications director Anne Black for her gracious assistance on site.
This is a song-and-dance I've performed many times before, as you know, and that might have been the problem. I was not as good as I should have been with my presentation. I'm my own worst critic, of course, but I felt I've been much better in past appearances. However, I learned two important things from the experience.
One, even though it's my own story and I've told it countless times, there is no substitute for rehearsal. ("Excuse me, sir, how do I get to Carnegie Hall from here?" the tourist asked. "Practice, practice, practice," the native replied.) Because I was pulled out of the Baxter PACt meeting briefly Tuesday to share my dialysis "testimony" with new sales reps, I thought that single run-through would be sufficient. It wasn't. I didn't have a clear Point A-to-Point B monologue, and I don't think I articulated it well.
I was delighted that the first followup question in the Q&A portion of my presentation went to Karen. But I think that speaks volumes as to how effective I was that day.
I think I also may have had an internal distraction. The gentleman who preceded me at the NKFI retreat, Baxter renal economic consultant Joe Connor, gave a very long and complex fiscal analysis filled with PowerPoint charts and graphs. It elicited numerous questions from the board members, and it was impossible to judge how long his Q&A session might last.
That was a dilemma, because I had to go to the bathroom! And I was certain that the moment I slipped out to find one, Connor would end his remarks and I would be MIA. So I stayed in my seat, my knees locked tight. I have no doubt my bladder predicament affected my concentration.
So that's the second thing I learned on this journey: When you're getting ready to speak in public and your nerves are running high, go potty before you really need to!
Yow!
Showing posts with label Patient Advisory Committee. Show all posts
Showing posts with label Patient Advisory Committee. Show all posts
Wednesday, October 5, 2011
Thursday, May 5, 2011
Making a PACt With Baxter
I spent a few days not long ago in scenic Waukegan, Ill., home of Baxter Healthcare worldwide, where I made my first appearance as a member of the company's Patient Advisory Committee team, or PACt. (As a professional editor it drives me batty that the "t" isn't capitalized too, but I try hard not to think about it.)
As another wonderful outgrowth of these wacky blog blatherings, I was invited last year to sit on the patient panel for Baxter, the company that manufactures my dialysis machine and supplies, in the off chance I might have something to contribute.
These meetings are highly confidential, as deep-dark details of products in production and yet to come are discussed freely. I could tell you some of the things we talked about, but then Baxter would have to kill me.
No, seriously.
In fact, it was kind of funny. Before the PACt confab, I was asked by my great and good friend, Trisha Daab of Baxter, to speak to the global marketing group she recently inherited. She wanted me to crank up my standard song-and-dance routine to a new audience and share firsthand feelings and experiences about being a kidney patient on Peritoneal Dialysis (PD). Sadly, the corporate workers who manage and market Baxter's goods almost never get to talk to the end users whose lives depend on their labors.
After that lively session I opened my laptop to check my e-mail. Because the PACt meeting was to be held in the same conference room, I left my computer open to mark my seat.
Minutes before the PACt was about to convene, one of Baxter's marketing bigwigs walked over and gently put his hand on my shoulder.
"Uh, Jim," he said warily, "you are aware that these PACt meetings are confidential?"
"Of course," I replied.
"Oh, OK. I saw you had your laptop out and I wanted to make sure."
Dude, this isn't like a baseball game where I need to cover the play-by-play action of the meeting as it happens! If I was going to reveal company secrets, don't you think I'd have enough sense not to do it inside the company? I was mildly offended! But apparently some of the bigger wigs at Baxter were slightly ruffled by my unvarnished honesty in describing my Baxter-sponsored trip to LA to speak to their annual sales convention (see "Shelter From the Storm" here).
I'm told somebody even asked if there was a provision in my speaking agreement with Baxter that gave the company any editorial control over this blog! I will not be censored! I cannot be controlled or muted! I will always tell the truth of kidney disease, dialysis and my life as I see it, without compromise! You loyal Just Kidneying readers deserve nothing less!
(The strains of "The Battle Hymn of the Republic" should be coming up in your mind right about now.)
For me, the best part of the PACt meetings was the opportunity to meet and interact with everyday people who have dealt with the same affliction that I have – and in some cases, suffered far more pain and damage. It's a comforting feeling to know somehow that you're not alone in this sickness, and a blessing to realize that as bad as it feels sometimes, it could be far, far worse.
The most surprising part of the day was the realization that, of the dozen or so participants relating their experiences with Peritoneal Dialysis, I was the only one who uses the Baxter "FlexiCap Disconnect Cap with Povidone-Iodine Solution" on a daily basis.
You see, the way the Baxter PD cycler works is, old dianeal solution is drained from the peritoneal cavity surrounding your innards, fresh solution is pumped in, then it "dwells" in your body for a couple of hours to attract and filter out all the impurities it can. During the "dwell" period, the cycler is essentially inactive.
Guess I had some wonderful and understanding dialysis nurses to train me, led by my Angel Who Walks on Earth, Diane King: I was taught that if you're careful and maintain sterility, there's nothing wrong with detaching yourself from the machine, capping off the fluid tube with a FlexiCap and going about your business during that time.
The "FlexiCap Disconnect Cap With Povidone-Iodine Solution" at Work.
During the day I run errands, have lunch, work out – just so I'm back and reattached to the cycler before the next drain begins.
When I said this out loud to my fellow advisors, they looked at me like I just fell out of Uranus. "Oh, NO!" they cried. "You must only use your FlexiCap in the most extreme of emergencies!"
Really? Really, folks?
After that, I pretty much just PACt it in.
Until the next advisory meeting in June, that is.
As another wonderful outgrowth of these wacky blog blatherings, I was invited last year to sit on the patient panel for Baxter, the company that manufactures my dialysis machine and supplies, in the off chance I might have something to contribute.
These meetings are highly confidential, as deep-dark details of products in production and yet to come are discussed freely. I could tell you some of the things we talked about, but then Baxter would have to kill me.
No, seriously.
In fact, it was kind of funny. Before the PACt confab, I was asked by my great and good friend, Trisha Daab of Baxter, to speak to the global marketing group she recently inherited. She wanted me to crank up my standard song-and-dance routine to a new audience and share firsthand feelings and experiences about being a kidney patient on Peritoneal Dialysis (PD). Sadly, the corporate workers who manage and market Baxter's goods almost never get to talk to the end users whose lives depend on their labors.
After that lively session I opened my laptop to check my e-mail. Because the PACt meeting was to be held in the same conference room, I left my computer open to mark my seat.
Minutes before the PACt was about to convene, one of Baxter's marketing bigwigs walked over and gently put his hand on my shoulder.
"Uh, Jim," he said warily, "you are aware that these PACt meetings are confidential?"
"Of course," I replied.
"Oh, OK. I saw you had your laptop out and I wanted to make sure."
Dude, this isn't like a baseball game where I need to cover the play-by-play action of the meeting as it happens! If I was going to reveal company secrets, don't you think I'd have enough sense not to do it inside the company? I was mildly offended! But apparently some of the bigger wigs at Baxter were slightly ruffled by my unvarnished honesty in describing my Baxter-sponsored trip to LA to speak to their annual sales convention (see "Shelter From the Storm" here).
I'm told somebody even asked if there was a provision in my speaking agreement with Baxter that gave the company any editorial control over this blog! I will not be censored! I cannot be controlled or muted! I will always tell the truth of kidney disease, dialysis and my life as I see it, without compromise! You loyal Just Kidneying readers deserve nothing less!
(The strains of "The Battle Hymn of the Republic" should be coming up in your mind right about now.)
For me, the best part of the PACt meetings was the opportunity to meet and interact with everyday people who have dealt with the same affliction that I have – and in some cases, suffered far more pain and damage. It's a comforting feeling to know somehow that you're not alone in this sickness, and a blessing to realize that as bad as it feels sometimes, it could be far, far worse.
The most surprising part of the day was the realization that, of the dozen or so participants relating their experiences with Peritoneal Dialysis, I was the only one who uses the Baxter "FlexiCap Disconnect Cap with Povidone-Iodine Solution" on a daily basis.
You see, the way the Baxter PD cycler works is, old dianeal solution is drained from the peritoneal cavity surrounding your innards, fresh solution is pumped in, then it "dwells" in your body for a couple of hours to attract and filter out all the impurities it can. During the "dwell" period, the cycler is essentially inactive.
Guess I had some wonderful and understanding dialysis nurses to train me, led by my Angel Who Walks on Earth, Diane King: I was taught that if you're careful and maintain sterility, there's nothing wrong with detaching yourself from the machine, capping off the fluid tube with a FlexiCap and going about your business during that time.
During the day I run errands, have lunch, work out – just so I'm back and reattached to the cycler before the next drain begins.
When I said this out loud to my fellow advisors, they looked at me like I just fell out of Uranus. "Oh, NO!" they cried. "You must only use your FlexiCap in the most extreme of emergencies!"
Really? Really, folks?
After that, I pretty much just PACt it in.
Until the next advisory meeting in June, that is.
Friday, December 10, 2010
Flashes From the Frontline
The Wife says I write these blog entries way too long. They're not even blog posts anymore, she claims; they've become "blarticles," a term I hope she copyrights before it becomes all the rage in cyberland.
"They don't all have to be complete, touching essays," Karen says. "Some of them can be just paragraphs." You think she'd know me by now, wouldn't you? I gots a lot to say! And, unlike writing for other publications and their editors, here no one can tell me when to stop! Whoo-HOO!
Still, I believe Karen may have a point, possibly. Maybe. A little. So today I'm going to briefly (I hope) mention a few topics I think are worth sharing with you in bullet-point fashion.
• Happy(?) Anniversary: December marks one year since I started on PD, Peritoneal Dialysis. So far, I'm feeling fine. Hallelujah!
• It's Alive! Alive!: Baxter Healthcare, the Illinois-based colossus that manufactures and supplies my dialysis materials, has just launched a new consumer Web site called Live Now: Rethink Kidney Disease. According to its home page, Live Now is "a movement to start living on your terms, with hope, optimism and strength. Kidney disease doesn't define your life – you do. It's time to get up, get out and live for today."
I am proud to say I was asked to serve as a contributing editor on this breakthrough project. The marketing folks at Baxter knew I was a professional writer (in the sense I can actually find people willing to pay me money to write stuff) and that I travel quite a bit for work while maintaining my Peritoneal Dialysis (PD) routine on the road, so they recruited me to create the main articles for the site.
I wrote pieces on traveling with PD, working full-time while on PD and (heh, heh) maintaining intimacy while on PD. (I consulted with Karen for the last one. Thankfully, she agreed it was possible!) The theme of the articles, and the site itself, is, "Yes! Yes! Whatever you did before you contracted kidney disease you still can do while on dialysis!"
The funny part was, when I got the assignment I approached it very seriously. I did my research, compared other articles on the subjects and wrote my first drafts in a very straightforward, scholarly manner. I'd forgotten that the people at Baxter read this blog, too. "There's something wrong with this," they said upon receiving the first draft. "It's not...funny enough! It needs more Jim in it! Are you all right?"
"You mean, you want it goofier?" I asked, incredulous.
"YES! We want you to write it like you write Just Kidneying!"
And so I did. Or tried to, anyway. You can be the judge. I thought about reprinting the articles here, but I'm sure my new clients at Baxter would rather I send you to their site. It's www.livenow.info.
I'm on Board With This: The miracle of the Just Kidneying blog continues. I have been asked to volunteer to sit on PACt, the Patient Advisory Committee for Baxter Healthcare. (I have no idea what the little "t" stands for.)
That sentence construction is correct: "asked to volunteer." Apparently, the way it works is, Baxter can't reach out and solicit people to join their advisory group. Looks a bit suspicious, like they're stacking the deck in their favor. But if you express some interest and tell Baxter, "Hey, I've got some opinions (I am a critic, after all), and I want to join your board!" then they can extend an invitation to become a member.
As I understand it, representatives from the R&D (research and development) and marketing departments will give presentations on their newest endeavors, and we get to provide input about how far off base they are. As a living, breathing dialysis patient, I hope to provide some real-life insights about how practical their innovations really are. The next meeting is in March 2011.
If you're a dialysis patient (or even if you're not) and would like to add your voice, shoot me a message; I will try to let you know what the bigdomes at Baxter are thinking and solicit your feedback. Think of me as your union rep!
In Praise of the Olfa Touch-Knife: Several months before I started PD, Karen and I were shopping at a Michigan outlet mall and on a whim we bought two Olfa Touch-Knives at the checkout table. They are marvelous little devices, about an inch-and-a-half wide with a retractable blade as sharp as an editor's pen.
They also provide the only real enjoyment I derive from this tedious dialysis process – slicing open the drainage bags after a fluid transfer and watching the liquid gush into the sink or toilet like a waterfall. It's exhilarating!
Sadly, during one of our recent road trips, I lost one of our knives. Crap! I went on the Olfa Web site, but they want you to buy like 100 or more to get an online discount. I only want one or two. So if you spot an Olfa Touch-Knife at any checkout counter or housewares store in the near future, buy a couple for me or let me know where you found them.
Cut me in, so to speak.
"They don't all have to be complete, touching essays," Karen says. "Some of them can be just paragraphs." You think she'd know me by now, wouldn't you? I gots a lot to say! And, unlike writing for other publications and their editors, here no one can tell me when to stop! Whoo-HOO!
Still, I believe Karen may have a point, possibly. Maybe. A little. So today I'm going to briefly (I hope) mention a few topics I think are worth sharing with you in bullet-point fashion.
• Happy(?) Anniversary: December marks one year since I started on PD, Peritoneal Dialysis. So far, I'm feeling fine. Hallelujah!
• It's Alive! Alive!: Baxter Healthcare, the Illinois-based colossus that manufactures and supplies my dialysis materials, has just launched a new consumer Web site called Live Now: Rethink Kidney Disease. According to its home page, Live Now is "a movement to start living on your terms, with hope, optimism and strength. Kidney disease doesn't define your life – you do. It's time to get up, get out and live for today."
I am proud to say I was asked to serve as a contributing editor on this breakthrough project. The marketing folks at Baxter knew I was a professional writer (in the sense I can actually find people willing to pay me money to write stuff) and that I travel quite a bit for work while maintaining my Peritoneal Dialysis (PD) routine on the road, so they recruited me to create the main articles for the site.
I wrote pieces on traveling with PD, working full-time while on PD and (heh, heh) maintaining intimacy while on PD. (I consulted with Karen for the last one. Thankfully, she agreed it was possible!) The theme of the articles, and the site itself, is, "Yes! Yes! Whatever you did before you contracted kidney disease you still can do while on dialysis!"
The funny part was, when I got the assignment I approached it very seriously. I did my research, compared other articles on the subjects and wrote my first drafts in a very straightforward, scholarly manner. I'd forgotten that the people at Baxter read this blog, too. "There's something wrong with this," they said upon receiving the first draft. "It's not...funny enough! It needs more Jim in it! Are you all right?"
"You mean, you want it goofier?" I asked, incredulous.
"YES! We want you to write it like you write Just Kidneying!"
And so I did. Or tried to, anyway. You can be the judge. I thought about reprinting the articles here, but I'm sure my new clients at Baxter would rather I send you to their site. It's www.livenow.info.
I'm on Board With This: The miracle of the Just Kidneying blog continues. I have been asked to volunteer to sit on PACt, the Patient Advisory Committee for Baxter Healthcare. (I have no idea what the little "t" stands for.)
That sentence construction is correct: "asked to volunteer." Apparently, the way it works is, Baxter can't reach out and solicit people to join their advisory group. Looks a bit suspicious, like they're stacking the deck in their favor. But if you express some interest and tell Baxter, "Hey, I've got some opinions (I am a critic, after all), and I want to join your board!" then they can extend an invitation to become a member.
As I understand it, representatives from the R&D (research and development) and marketing departments will give presentations on their newest endeavors, and we get to provide input about how far off base they are. As a living, breathing dialysis patient, I hope to provide some real-life insights about how practical their innovations really are. The next meeting is in March 2011.
If you're a dialysis patient (or even if you're not) and would like to add your voice, shoot me a message; I will try to let you know what the bigdomes at Baxter are thinking and solicit your feedback. Think of me as your union rep!
In Praise of the Olfa Touch-Knife: Several months before I started PD, Karen and I were shopping at a Michigan outlet mall and on a whim we bought two Olfa Touch-Knives at the checkout table. They are marvelous little devices, about an inch-and-a-half wide with a retractable blade as sharp as an editor's pen.
They also provide the only real enjoyment I derive from this tedious dialysis process – slicing open the drainage bags after a fluid transfer and watching the liquid gush into the sink or toilet like a waterfall. It's exhilarating!
Sadly, during one of our recent road trips, I lost one of our knives. Crap! I went on the Olfa Web site, but they want you to buy like 100 or more to get an online discount. I only want one or two. So if you spot an Olfa Touch-Knife at any checkout counter or housewares store in the near future, buy a couple for me or let me know where you found them.
Cut me in, so to speak.
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