Urgent call for help - rare pediatric side effect of dialysis

My social media friend Dale Ann Micalizzi sends an urgent call for help. A 3 year old's life seems to be in imminent danger

I need help for a family that I'm working with from a pediatric nephrologist specializing in dialysis where child is having a rare side effect that no one seems to have heard of before. Please email me if you know of someone willing to talk w/family or PICU or answer a few questions for me.
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Because of this flesh eating infection, he lost all kidney function and is on dialysis. The entire doc team never heard of the reaction that he's having to the dialysis. His face turns red, he screams the entire 2 hours even though he's on high power narcotics. His heart rate races to almost 200 and becomes tachycardic and his BP drops. If you could ask your nephrology friends if they have ever heard of such a thing and what they could do to relieve his pain or if anyone would be willing to talk with the Mom so that she could feel that she tried everything to save him?

More information is in this newspaper story. (Caution - some specifics are unbearable to read, and the important info is above.)

Because time is short and I'm overseas (not online constantly) please email Dale directly: micalizzidag at AOL. Or if you know of a specialist with info, they can contact the hospital directly - the main number is 518-262-3125. The family's name is in the newspaper story.

Leonard Cohen's "Hallelujah" as sung by my sister

When I was in college in Boston, Canadian singer-songwriter Leonard Cohen was a big deal. His dark, pensive voice and poetic lyrics set him apart from much of Sixties music.

His best-known song then was "Suzanne," but Wikipedia says in recent years it's been surpassed by his 1984 "Hallelujah." I'd never heard it until, at my sister Suede's recent concert at Boston's Sculler's Jazz Club, she pulled it out (total surprise to me) and rendered a beautiful, spiritual six minute version of it.

Suede is much loved on Cape Cod, and she sang it at an annual spring bonfire, another much-loved occasion. Perfect.

CaringBridge testimonial video

Last week I wrote about my visit to CaringBridge headquarters. The night before I had an idea - why not pull out a camcorder and record an impromptu testimonial? I've been doing some video interviews lately, and they come out okay; why not give a big thank-you to the website that meant so much to me, and to my community, during my illness?

I was tired (not enough sleep that intense week!), so I was a little hoarse, but here it is. Heartfelt.



(Email subscribers, if you can't see the video, click here to view it online.)

I encourage you to send a donation to CaringBridge, small, large, or tiny. It's a darn good service, and they offer it free to anyone. And at a time of crisis, that's a big deal. You can help make it possible for more people.

"The poster child for patient empowerment" - Mpls Star Tribune

Well THIS is fun.

Last week I gave the keynote address at the 13th annual ICSI / IHI Colloquium - an audience of 500+ physicians, hospital administrators, health plan (insurance) executives, all focused on doing healthcare better. ICSI is forward-thinking and Minnesota-based (not surprisingly - MN is a long-time leader of better health practices), and is finally starting to get recognition outside the state. Attendance in the past has always been around 300, so it's good to see it growing.

In the audience was Maura Lerner, a health reporter for the Star Tribune. We talked afterward, and she wrote a long, great piece that was on the front page of today's paper. A few details of my story are a little off, but she completely got the message right regarding patients being engaged in their health, as effective partners of their physicians.

They wanted a photo, so they came with me the next day when I visited the headquarters of CaringBridge, the wonderful website I used to communicate with family and friends during my illness. This photo is from the tour I was given by Sami Pelton, their director of partnerships. (That's her.)

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Update 5/17: During the visit I recorded an off-the-cuff testimonial video for them. It's in my next post.

Book launch and jazz show April 22, Boston!

I have exciting news and an invitation to all of Boston: Please rearrange your life and join me, Thursday night at Scullers Jazz Club!

The news: I’m announcing my first book. It'll be out in June. Cover art is at left.

It's my story then and now: excerpts from my online CaringBridge journal, interwoven with what I’ve since learned about e-patients and participatory medicine.

The title reflects the mind-powered approach I took to my “prognosis is grim” disease. (More on this below.)









The invitation is for all of New England to come celebrate and honor a singer who was a huge, powerful force during the course of the disease: my sister Suede. (Yes, that’s her name.)

She’s performing Thursday, April 22 at Sculler’s Jazz Club in Boston. One show only. Tickets: http://www.scullersjazz.com/attractions/detail.htm?id=839

With four CDs and a live DVD to her credit, Suede is a self-made independent artist with a phenomenal stage presence. Be prepared to be owned by the diva for the entire evening. You’ll see what I mean.

All New England, please come join us! It’s a dual celebration – Suede rarely plays Boston (she’s more often found on Olivia Cruises), and I’ve never published a book. April 22, 8 pm. Best seats go to those who buy the dinner/show package.

Q & A follows. "Do it!," as Suede says during one of her songs. :-)

What’s the title about??

It's the approach I chose to take to the news that I had a lethal cancer - a summary of the advice I got in the first few weeks after diagnosis, before I even started my journal:

• "Laugh" is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness
• "Sing" is the advice my doctor gave. I had asked if I should drop out of my much-loved championship chorus to save energy, but he said, "You don't want to stop doing life activities that you love - it sends the wrong message." Wow. So, okay, laugh and sing! Not bad.
  
• "Eat like a pig" refers to the diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

Admittedly, "laugh, sing and eat like a pig" is not a conventional approach to a deadly diagnosis. But that's kind of the point. And the whole story is true, every word.

Why a book with this message?

4,000 people a day (in the US alone) discover they have cancer, and face that moment of "What on earth do I do NOW??" I know that feeling. Some look for what to do next; others don't even think they can do anything — they just think they're screwed and go into depression. This book is about hope, getting it in gear, and going "e." (E-patients are "empowered, engaged, equipped, enabled, and educated.")

What does Suede have to do with it?

"Laugh Sing" is about facing the unfaceable with power and grace, and nobody was a stronger influence than my sister Suede.

She taught me to have a powerful relationship to the disease (all explained in the book) and not be owned by it. She taught me what she learned about facing death from her years working with patients in the AIDS epidemic. She brought people from her extraordinary fan base to join our support group on CaringBridge.

Most incredibly, she organized an impossible effort to solve another challenge I’ve rarely discussed: The whole time I was sick we owned an extra house.

We’d lived in the Midwest for a while before something told us we had to get home to New England. We put that house up for sale in 2006, just as the market hit the skids, though nobody knew it yet; we thought it would sell soon.

Then I found out I wasn’t getting the job that was 99% (not 100%) certain. So for months I owned two houses with no income. I found a job. And three months later I learned I had Stage IV cancer.

The value of both houses started dropping. 30%, eventually. So, while I was sick we also had carrying costs for two houses on a one-house budget. And not even any showings on the old house. It felt crushing, but we were focused on just staying alive. First things first.

Then, we got an offer. For $18,000 less than we owed.

What did Suede do? She organized an incredible campaign and put on a benefit concert – she and her community raised the $18,000. So, in September 2007 we sold that house and got the official word that I’d survived. It was a very good month.

Join us. Celebrate the book, Suede, and life!

You can see what a powerful, wonderful, amazing woman this soulful singer is. She will own you for that evening.

At the benefit concert my physician Dr. Danny Sands and wife Libby came to the first half of the show. He was blown away: at halftime they were trying to decide which CDs to buy, and they decided they had to stay for the second half to hear more songs.

That's how good she is. (He later said “We came for you, but we stayed for Suede.”)

Let’s sell out the house! Bring friends! Rearrange your life for this rare show - buy tickets. Celebrate life!

When I Leave the World Behind

Work is underway on a book I promised several years ago to write. It’s extracts from my cancer journal on CaringBridge - the cancer story itself, and how I used everything at my disposal to help my cause: the internet, great medical care, and the power of attitude. Woven throughout are observations on how e-patient principles are changing the process of disease (and health). At the time I’d never heard of an “e-patient,” but what my support community and I were doing exemplified it.

The book's work is being driven by my long-time associate George Alexander, who is also the publisher.

It’s been emotionally hard to dig back through those journal posts, because those were scary times. The chapter I’m working on now is about hope, so yesterday I read Jerome Groopman’s book The Anatomy of Hope. It's filled with stories of being with patients as they faced probable death, and the physician’s journey of learning to help them deal with it.

I cried as I recalled facing my own death. It was accentuated by recent events:

• Fellow kidney cancer patient Rick Schleider died last month.
• My classmate Don Levinstone lost his fight with pervasive lung cancer last month.
• Last week my dear singer-sister Suede's longtime companion dog Angel died. Angel was a miracle dog, an abused stray who lived on a highway median for months before being rescued. Suede adopted her and gave her a life she never would have known. The loss is hard on her.
• Today’s CBS Sunday Morning had a Katie Couric segment on children who lose a parent. (5% do, before age 15.) The family photos and the footage of the children’s words, their loss, brought me back to the thought of leaving my family behind.

And that brought me back to my own father’s death in 2005, when I lived a thousand miles away. Traveling to see him wasn’t easy. The last time I left him in the care facility I said I’d be back soon and kissed his forehead. His last words to me were “That will be nice.” All signs were that the end was near, and it was.

That night I attended the annual concert of my sister Amy’s excellent Sweet Adelines chorus The Pride of Baltimore. The headline act was Wheelhouse, a champion quartet whose signature song is When I Leave the World Behind. Irving Berlin's beautiful lyrics [below] flooded me; I sat there with tears running down my face, thinking of my dad's departure from this world.

Today that song came back to me as I heard the children talk. I found Wheelhouse's performance on YouTube, and found myself sobbing with feelings I hadn’t touched in three years, a much needed catharsis.

Here it is; the lyrics are below. (This handheld video is shaky at first but it settles down.) [2020 update: that video is gone from YouTube, but here's one by another championship level quartet.]

When I Leave the World Behind
Irving Berlin, 1915

I know a millionaire
Who's burdened down with care
A load is on his mind
He's thinking of the day
When he must pass away
And leave his wealth behind
I haven't any gold
To leave when I grow old
Somehow it passed me by
I'm very poor but still
I'll leave a precious will
When I must say good-bye

[Refrain:]
I'll leave the sunshine to the flowers
I'll leave the springtime to the trees

And to the old folks, I'll leave the mem'ries
Of a baby upon their knees

I'll leave the night time to the dreamers
I'll leave the songbirds to the blind

I'll leave the moon above
To those in love
When I leave the world behind

[2nd verse:]
To every wrinkled face
I'll leave a fireplace
To paint their fav'rite scene
Within the golden rays
Scenes of their childhood days
When they were sweet sixteen
I'll leave them each a song
To sing the whole day long
As toward the end they plod
To ev'ry broken heart
With sorrow torn apart
I'll leave the love of God

[Refrain:]
I'll leave the sunshine to the flowers
I'll leave the springtime to the trees

And to the old folks, I'll leave the mem'ries
Of a baby upon their knees

I'll leave the night time to the dreamers
I'll leave the songbirds to the blind

I'll leave the moon above
To those in love
When I leave
the world
behind

I’m so glad to still be alive, alive to keep loving those things for a few more years. Thanks to all of you who were with me then, and thanks to all of you who work today to make a world of better healthcare.

TED talk: Intel's Eric Dishman: Take health care off the mainframe

Intel (the computer chip maker) is big into healthcare these days. A lot of people wonder what computer chips have to do with healthcare. At one level you could say that when we all have home health devices, millions more chips will be sold. But as you're about to see, there's a lot more to Intel's thinking than that.

Eric Dishman is director of health innovation and policy for Intel’s Digital Health Group. They're not just talking about what we mean by healthcare today - they're talking about a very, very different approach to what medicine today tries to solve: living better, living longer.

Best License Plate of the Month

Spotted today by daughter Lindsey. Who rocks, btw.

(The first letter is a Q, in case you can't tell.)

Adding the Odiogo blog post reader

I've just added something to this blog that I've seen for years elsewhere: the Odiogo "Voice your content" plugin. Click the "Listen now" button at the top of any post and it'll read it to you.

Pretty amazing, for free. To tell the truth, though I've seen it for years, I've never quite believed it. But it works. :-)

Thanks to two perennial leaders for being the bloggers where I've noticed it:

• Jen McCabe of Health Management RX. (Read her still-extraordinary "I am an e-patient" post from 2008
• Brian Ahier of Healthcare, Technology and Government 2.0. Brian is one of the most down-to-earth, "What makes a difference here?" bloggers in health IT. So it's not surprising that last night when I was looking for a good summary of the current health overhaul bill, I found it on his blog. (It's the second document listed in the post.)
  

That post on Brian's blog is where I found Odiogo again.

Lean retreat, day 5: Reporting to leadership, taking it back to gemba

Here's our class photo. A whole bunch of inspiring residents, some attendings (full doctors, I believe?), some nurses, and a couple of patients:

Today we reported to leadership on the process we'd gone through. One of Lean's principles is to ask the experts, and if you've been paying attention you know that in Lean the experts are the ones who do the work. So after introductions, the presentation was delivered by us - the students.

Of course, this being a major teaching hospital, the leadership provided some, ahem, clear feedback. :-) But this hospital being a great place, the "clear feedback" was delivered respectfully and with good, open dialog.

A big part of our thinking today was about taking it back to gemba - the workplace. Anyone who reads Dilbert knows that too often a retreat like this ends up as an impotent misfire. So our leaders Alice Lee and Julius Yang MD led discussion of how we'll work at bringing these changes to life, while fitting the work into everyone's full workday. I look forward to seeing how it goes.

I pointed out that this process of building bridges, from the "decision room" into the next step, parallels the work we did on the patient discharge process: building a bridge from the staff's intentions out to the patient's home. Without that work, handoffs of either type are unlikely to bear fruit.
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I want to say again what a great experience it is to be actively engaged in the process of improving care delivery at my hospital. I know patient engagement isn't new; I'm just so happy to be involved in this way. Believe me, I was a full and active participant, and I wasn't just "surveyed" and sent packing, I was part of the team. What a great experience. And what fun!