Saturday, December 2, 2017

Make a List of All You Do. The Results Might Surprise Even You!

Micheal and Me: With the Amazing Micheal Turner
CHICAGO – Recently I was here to attend the annual meeting of The Renal Network ESRD Network 10 Board of Directors, on which I am proud to serve as a patient representative.

The Renal Network is a not-for-profit organization tasked with monitoring the quality of dialysis care in Network 10, which covers the state of Illinois. (There are 18 such networks nationwide, all under the direction of the Centers for Medicare and Medicaid Services (CMS), responsible for every U.S. state, territory, and the District of Columbia.) I've been affiliated with Network 10 in one form or another almost since my kidney disease and I moved to Illinois in 2009.

I am one of two patient reps on the board. The other is a gentleman named Micheal Turner, of whom my admiration knows no bounds. He's the Real Deal, a true believer, a warrior for patients' rights. Sometimes I'm almost jealous of Micheal because he still has such an active, caring, hands-on role in his dialysis clinic. He rallies and organizes his fellow in-center hemodialysis  patients, acts as liaison between patients and staff, follows up on grievances.

Then again, being as fully engaged as Micheal Turner means I probably would be on dialysis again.

Never mind. You go, Micheal. 

Typically speaking, neither he nor I get to do a lot of talking at these board meetings. It's not that we aren't valued, as has been the case at some other meetings I've attended where nephrologists, dialysis nurses and other health professionals look at patients as a necessary evil, or at worst, an annoyance to be patronized. It's just that Network 10 has undergone some major structural changes the past few years and much of our time has been spent in organizational details, rewriting bylaws, that kind of thing.

Not this time. A few days before the meeting, our executive director, Bridget Carson, emailed me and said she would like to begin the agenda with a "patient rep update." It would be an opportunity to introduce the new board members – and many of the old ones, I'd wager – to who we are and our activities outside the boardroom.

And give us a chance to speak, too.

Open a Magazine and See Your Face? Cool, But Creepy. 
So the night before, in my Chicago hotel room, two extraordinary things happened. I picked up the latest copy of CS (Chicago Social) magazine, one of those glossy local publications found in every Windy City hotel room and one for which I write, and much to my surprise found my little brown mug staring back at me from the contributors' page! Magazine deadlines are so far in advance that I'd forgotten I had even written a story for that issue. That'll wake you right up!

The other thing was, now completely awake in my cool, quiet room, I actually had time to think about all my kidney-related activities and jot them down in advance of my meeting moment.

In addition to sitting on the Network 10 Board of Directors:

• I'm a "subject matter expert" in the area of patient mental health for the Florida-based National Patient and Family Engagement Learning and Action Network;

• I remain involved with the National Kidney Foundation of Illinois (NKFI); I will be delivering the keynote address December 2 in Champaign for their seminar entitled, “Living With Kidney Disease and Transplantation;”

• I served a two-year term as the ESRD (End-Stage Renal Disease) patient representative for the state of Illinois. Yeah, the whole freakin' state. While largely a ceremonial position, the title allowed me in the front door at many dialysis clinics throughout the state, where I got to meet and talk to dialysis patients of all stripes;

• I completed the training to become an ambassador for Gift of Hope, the organ and tissue donation network for Illinois and northwest Indiana;

• I'm the acting secretary for my local NKFI Champaign kidney disease and transplantation support group,

• And, of course, when time, topic and energy combine, I still maintain this blog, which played a major role in allowing me to win the Robert Felter Memorial Award from The Renal Network in 2011 for outreach and information to the kidney community.

I say all this not to strain my shoulder by patting myself on the back. It's just that sometimes when you're running the race, you don't stop to notice how far you've traveled. I really had no idea about how many renal-related activities I was and am involved with until I took time out to write them down.

I still prefer the personal touch myself. Over the past five years or so, I've become sort of Kid Kidney, medical advisor to friends and acquaintances far and wide. Many of my younger years were spent with people who rocked hard and partied harder, and it seems all our bodies are breaking down about the same time. 

I'll bet I field at least three calls or messages a month from old buddies, people they've referred, even total strangers, who have just been diagnosed with some stage of kidney disease and want to talk about dialysis and transplant options. "They're just scared," comes the usual explanation. "They know you've been there before." I'm honored by their trust. I always advocate peritoneal dialysis (PD), the option that saved my life.

Of course, that option is not always available. Not long ago I received a call from a dialysis nurse I know. She had a patient – we'll call her Sally – who was on the verge of ending her hemodialysis treatments. She lived alone, and she had grown tired of the draining three-times-weekly clinic visits, securing transportation, the physical and emotional highs and lows. She was ready to pack it in. "Could you just come and talk to her?" the nurse asked.

What the heck could I tell her? But I met Sally during her next dialysis treatment. "I'm not here to tell you what to do," I began. "I just wanted to meet you and talk." 

Sally said she couldn't do PD because she couldn't handle the equipment and heavy boxes of fluids by herself. She was retired, and tired, and just didn't see any future for herself. We talked for 30 minutes or so; actually, I probably did most of the talking. As I left I handed her my business card and invited her to attend one of our monthly support group get-togethers. I left feeling like I had accomplished nothing whatsoever.

Two days later, I received a call from the dialysis nurse. "What did you say to Sally?" she asked enthusiastically. "The whole session, she kept saying, 'Jim said this,' and 'Jim said that.' She seemed like a totally different person."

I'll never get board of meetings like those.

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