Wednesday, May 26, 2010

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.

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.

Thursday, May 20, 2010

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.

Monday, May 17, 2010

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.

Friday, May 14, 2010

"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.)


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