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.
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.