Monday, September 23, 2013

Jimmy Cracked Crabs, and Learned About Care

Got an email from The Renal Network, the nonprofit dialysis monitoring group that made this an "award winning" blog and for whom I serve as patient representative for its "Network 10," covering the entire state of Illinois.

There's a national conference in Baltimore this September aimed at improving safety for dialysis patients, the message said, and would you like to attend as our guest on behalf of Network 10?

Swear to God, the first thing that leaped to my mind was, "Hmmm, crab cakes."

What the heck? Who am I, the black Homer Simpson?

But yes, of course! I shuffled a few meetings on my schedule and gladly agreed to go. Selfish motive: I've been invited to speak at another national convention in Orlando the following month about my experience as a kidney patient on Peritoneal Dialysis (or PD – more about that at a later date), and I hoped to pick up a few factoids or public speaking tips that might help my own presentation.

Well, I'm back from the convention – held at the worst hotel I've ever had the misfortune to inhabit, the Sheraton Baltimore City Center – and I'm so glad I went.

(Why is this Sheraton Baltimore the worst hotel in my history, you may ask? Thanks for caring! Let me give you just one example:

The morning of my checkout, preparing for a 15-hour travel grind from Baltimore to Detroit, I hopped into my shower only to discover it had no water. Not just no hot water: no water at all!

When I went down to the front desk to complain, the uncaring clerk slapped a piece of paper on the counter and pushed it toward me. The heading read, "Baltimore Water Restrictions." Apparently, the city was in the process of upgrading its water pipelines.

"It's the city's fault," the clerk said, looking at me like I should just understand.

Would you want to begin a grueling daylong journey without a hot shower? Would you pay $200 a night to stay in a hotel that couldn't provide one? Even Motel 6 can do that! I pitied the people who sat next to me on the flight home!)

I do love Baltimore, however. Went there years ago simply because it was a major American city I never had visited before, and set a goal to sample as many varieties of crab as I could. For five days I savored authentic Maryland crab broiled, baked, sautéed, fried, steamed and raw.

And crab balls.

All crustaceans that are weary and heavy laden with butter, come to me and I will dip you in tartar sauce. Seafood, eat food. I knew it was unlikely I could duplicate that bliss during the gaps in a day-and-a-half conference, but it wouldn't be for lack of effort.

Grand and glorious city, Baltimore. The Inner Harbor. Camden Yards. The National Aquarium. But I must say, they do drive kind of funny there.

Saw this on my walk back from dinner on my first night in town. I'm thinking the driver must have figured this was the real Grand Central and his car was a train.

My biggest takeaway from the conference – besides the crash and the crab cakes – is that nephrologists and other medical practitioners are just as concerned about patient safety as patients are, if not more so...and just as bewildered and uncertain about the best way to achieve it consistently.

Dubbed "Creating a Culture of Quality: The Critical Role of Communication in Improving ESRD (End-Stage Renal Disease) Patient Safety," the keynote speaker was Jonathan Blum, whose title is, "acting principal deputy administrator and director of the Center for Medicare Centers for Medicare and Medicaid Services (CMS)."

That's mouthful enough, but Mr. Blum could have stood at the podium and yodeled the lyrics to "Blurred Lines" and this audience would have hung on every word. That's because whether you're a dialysis patient, kidney transplant candidate, recipient or medical provider, you are intensely interested in the status of CMS because it provides so much financial assistance for renal patients who could not possibly shoulder all the costs of dialysis treatments and medications on their own.

Blum declared that Medicare is spending "much less than any other avenue of the health care delivery system" and that CMS is "producing more value, higher quality and lower costs to taxpayers and beneficiaries. It is possible to improve overall benefits...while costs are going down."

That's such good news that I was hoping he wasn't just delivering happy talk to an audience eager to hear it. Then again, as far as I know Blum isn't running for office, so I'll take that positive outlook at face value for now.

I was so impressed by Dr. Richard Formica Jr. (pronounced exactly the way you wouldn't think), associate professor of medicine and surgery at Yale University, who shared the results of Yale research that shows major disparities and barriers exist in access to kidney transplants, then discussed his university's approach to solving those problems.

According to Formica, such factors as education (or lack of it), socioeconomic status, race, obesity, even gender (males over females) can play a role in one's placement on a transplant list. Once you're on the list, he said, everyone is equal, but prior to that being poor, or black, can make a difference. As he continued speaking, it sounded as if being African American was such a roadblock to receiving a new kidney that I leaned over to my friend Jim Dineen, representing Network 9, and whispered, "How the heck did I ever get a transplant?"

However, as is so often the case, it was the personal stories from patients, regular folks who have faced extraordinary medical challenges and stared them down, that left the greatest impact.

I was fascinated by the poise, polished thoughts and communication skills of Virna Elly, the ESRD patient representative for Network 5 (the home team, representing Maryland, Virginia, West Virginia and D.C.), who has been a diabetic for 33 years, an ESRD patient for 13 and has battled hypertension, hyperthyroidism and cataracts. "I've been sick longer than I've been alive," she quipped, though she soon will celebrate eight years with a successful kidney/pancreas transplant.

Elly posited the unique theory that to truly understand the kidney patient experience, one shouldn't visit dialysis centers or waiting rooms – go to support and advocacy groups, filled with people who are actively involved in gaining knowledge and insight about their illness. "If you really want to know about alcoholics," she reasoned, "don't go to the bar. Go to AA."

Yet, the superstar of these sessions for me was the delightfully homespun Maggie Carey, chair of the Patient Advisory Committee for Network 11 (Mich., Minn., N.D., S.D., Wis.) and the second of four family generations to be afflicted with polycystic kidney disease.

"I watched my mother die on dialysis," said Maggie, who soon will celebrate 17 years with her kidney transplant, remembering her abject fear of going on Peritoneal Dialysis – or any form of dialysis, for that matter. "My nurse said, 'Oh, honey, you can do it. My father does it, and he's 90. And blind.'"

Maggie contended there are three basic questions every patient diagnosed with kidney disease asks:

"Am I going to die?"

"Am I going to look silly while I die?"

"How much is it going to hurt?"

I, of course, would add the fourth, and most important question of all:

"Will I still be able to eat crab cakes?"

(For information on the "Creating a Culture of Quality" conference itself, including all presentation slides displayed at the event, go to and click "Quality Conference September 2013" on the left-hand side.)