Gin-knee-versary! A year since my wife got her unbelievable new knees from @HJLuks

Ginny at Half Moon restaurantThis is a verbatim copy of an extraordinary blog post last year, which I updated several times.

It was a year ago today that orthopedist Howard Luks @HJLuks replaced both my wife Ginny’s knees in one day, and as you’ll read, his method is so incredible that not only did she get no transfusions, her bandage didn’t even need to be changed until the follow-up visit weeks later. And as you’ll see, the progress of her recovery was extraordinary.

Want new knees? Read how Howard does it. Know anyone who’s considering new knees? Share this with them, please! I even gave it a memorable URL: bit.ly/ginnyknee


July 7, 2015

On Facebook Friday I posted this picture of my wife Ginny, saying “There is an astounding story behind this photo. Details Monday.” Well, it’s Monday.

As you read this, bear in mind, your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The astounding story:

In this photo we were out to dinner, nine days after Ginny had both knees replaced. She walked into the restaurant using only canes – no walker, no wheelchair. The surgeon is Howard Luks, the social media orthopedist (@HJLuks), whom I met on Twitter in 2009, and the surgical approach he used is called muscle-sparing (or “quad-sparing”) minimally invasive surgery, part of a larger package of methods he uses, described below. Bottom line:

  • None of her muscles were cut
  • She had no transfusions
  • She has not needed to have any of her dressings changed
  • She left the hospital on day 3, was discharged from rehab 8 days after surgery, and today on day 12 we’re returning to New Hampshire, to continue outpatient physical therapy from home.

Of course she’s still on pain meds, tapering down, and her endurance is of course limited. But she is basically functional and able to live on her own if she needed to, or rehab wouldn’t have discharged her.

Here’s a video of her walking around the hospital floor – 500’ – with a walker for balance (not leaning on it), less than 48 hours after leaving the O.R., and on the right, at rehab, walking with just canes, a week after the surgery:

She was discharged from rehab after demonstrating (among other things) that she can safely walk up and down a full flight of stairs … six days after the surgery. She can get herself into and out of bed, into and out of our Prius, etc. She’s not speedy at any of it but she’s functioning reliably.

(Of course I have Ginny’s permission to talk about all this. Also, I’m an e-tool geek and she’s not, so I’m the one using the tools discussed here.)

Again, everyone, please read this: your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The part Ginny played, as an activated, engaged patient

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Geneva, Monday June 27: evening keynote open to the public!

Click to visit press release page

Click to visit press release page

Next Monday, June 27, I’ll be doing something really fun: an evening keynote at a medical conference in Geneva, Switzerland, open to the public. If you know anyone who can get there, please invite them! It’s just 20 Swiss francs (about US$21), and simultaneous translation will be offered.

The conference is NI2016 (Nursing Informatics 2016), whose theme this year is “eHealth For All.” My talk is from 6:20 to 7:20 pm, followed at 8 by a fashion show featuring wearable technology.

The conference will provide simultaneous translation into German and French, and a delegation from China will have its own simultaneous translator.

I’ll take a moment here to mention four international editions of my signature book Let Patients Help, because of the international nature of this event – and because three translators will be present:

French, German and Chinese editions
(and Spanish)

Let Patients Help is available in eight languages, a real sign that participatory medicine is not just an American thing – it’s becoming a global movement. In addition to English, four languages are relevant to this event:

  • Christine Bienvenu

    Christine Bienvenu

    French: Impliquons les Patients!
    Christine Bienvenu (right), translator of the French Kindle edition, would love to find a publisher or sponsor for a print edition. Come meet her!

  • German: Lasst Patienten mithelfen! is Part 1 of the German e-patient textbook Gesundheit 2.0.
  • Chinese: 请患者参与 (available only in China … this may be of interest to the Chinese delegation)
  • Spanish: ¡Dejad que los pacientes ayuden! I mention this because its translators, Elia Gabarron and Luis Fernandez Luque, will also be present.

Again, if you know anyone in the area, please do invite them. Thanks!

 

Perceptive new work on diabetes stigma. Well done!

Diabetes misconception slideI haven’t had occasion to talk much about it yet, but in November 2014 Dr. Danny Sands said routine blood work showed my hemoglobin A1C was slightly elevated. That’s what they call “pre-diabetic,” so woohoo, I get the privilege(?!) of pivoting from the cancer world to learn about diabetes in its many forms.

Man, it’s complicated – I did everything right, lost 40 pounds, became a runner, and my A1C went up! That’s how it goes sometimes, according to my friends in “the DOC” – the “diabetes online community.” Managing diabetes is complex – lots of work to do every single day. That’s one reason I’ve always said a healthy PWD (person with diabetes) is the archetypical e-patient (engaged patient).

I’m at a diabetes conference (more on that below), and last night I saw what may be the most perceptive, smart, patient-centered presentation I’ve ever seen. Ever seen. Anywhere.

I’m new to this field, so maybe this kind of thinking is commonplace here, but not from what I’ve seen. Lots to say about it, but for today here’s a starter post.

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#2016ADA day 1: incredible interview with “artificial pancreas” creators Dana and Scott


If you can’t see the video above, click to watch it on Vimeo.

One of my favorite sayings about digital health is “When assets digitize, things change fast.” The point is that once information (or anything else, even fonts) goes digital it can suddenly be hundreds of times faster to develop new things. In health and care, a special kind of liberation becomes possible: if the person who has the problem can suddenly invent things, what becomes possible?

I’m at my first-ever diabetes convention, the American Diabetes Association’s 76th annual Scientific Sessions. I’ve written before about @DanaMLewis and husband @ScottLeibrand of OpenAPS.org, the open-source Open Artificial Pancreas System project. (Most recent was this on this site “When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas and this amazing speech last month on e-patients.net.)

Did you know it’s not unusual for a basically health person with diabetes to die in their sleep? I never heard that until I got to know people in the DOC (diabetes online community). (Amazing what happens when you talk to the person who has the problem, eh?) That’s why I want awareness of what diabetes is, and awareness of this amazing project, to spread way beyond the usual diabetes community.

So early in this interview I ask Dana to briefly explain what the pancreas does, why it does it, and what goes wrong if it doesn’t work, which (I assure you) will lead you to understand why people with this disease might say “WeAreNotWaiting.” (If you don’t know that phrase, google it.)

Dana flashes her pocket pancreas while husband Scott grins

Dana flashes her pocket pancreas while husband Scott grins.

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Understand the Blockchain in Two Minutes: Institute For The Future

If this is the first time you’ve heard of blockchain, remember it.

If you’re like me, this will be puzzling and maybe a little bit unsettling, because people are saying it’s going to change the world, but it’s not at all clear what it even is, much less why it would change the world.

But I understand enough about it now to say (with reasonable(?) confidence) that they’re right, but it’ll be years before we all see it happening.

This is not specific to healthcare, but  it will surely show up in health information.

It’s called blockchain, and the Wikipedia article on it doesn’t help much. But that’s why I like the two minute video I found last week (above), from the Institute for the Future…. how? Why, via Twitter, of course – hat tip to @Sasanof (David Grayson) for his tweet! Please click to watch it. (Email subscribers, if you can’t see the video, click the headline to come online.)

Blockchain is as fundamental a change as HTTP and SMTP.

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“Think, think, think”: message to European Cancer Patients Coalition AGM

View mHealth presentation to ECPC Annual General Meeting on Vimeo.

ecpc logoThis is a quick first post to get this online before the meeting finishes. I hope to add more notes below.

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

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“When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas

Dana Lewis on stage at O'Reilly

Click image to watch video on the O’Reilly site

For some reason I’ve spoken about this a lot in speeches for more than a year but I haven’t blogged about it. The time has come.

One of my sayings in Let Patients Help is a lesson we learned in graphic arts, and the music industry learned too: “When assets digitize, things change fast.” This is, truly, an extraordinary example.

Some people with diabetes pretty much do as their doctors tell them and the industry tells them – they wait and hope that things will get better. That’s fine with me – I never say that people should be more like me. But when someone wants to take a more active role, I believe society (including medicine) should not stand in the way: let patients help improve healthcare.

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“The Patient’s Perspective – medicine’s new true north” – essay in PLAID diabetes journal

PLAID Journal coverFor the past year I’ve mentioned this in speeches, but I’ve never written about it here: in November 2014, a routine blood test revealed that my hemoglobin A1C was slightly elevated, making me what they call “pre-diabetic”:

A1c screen capture

Well, that got my attention.

Why? Because, through social media, I know a lot of really smart, articulate, passionate members of “the DOC” – the diabetes online community – and I’ve learned all kinds of things about the reality of diabetes that you don’t see in the TV commercials. I’ve learned that it’s not rare for a basically “healthy” person with diabetes (PWD) to die in their sleep when their blood sugar crashes; I’ve learned about unfixable nerve pain and amputations; I’ve learned about all kinds of things that can go wrong when diabetes gets out of control. (I don’t even know enough to make a properly prioritized list, but I know enough to say you do not want to get diabetes if you can avoid it.)

(Footnote: type 1 diabetes (T1D) is medically different from type 2 diabetes (T2D), which I am at risk for – it typically arises in middle age. But that’s a subject for another day.)

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What questions should researchers ask about “the weekend effect” in hospitals?

Death rate for stroke patients (red line) is worse as nurse coverage shrinks

Death rate for stroke patients (red line) is worse as nurse coverage shrinks. From wikipedia.org/wiki/Weekend_effect May 16, 2016

Update: I’ve changed the headline, because people kept answering the wrong question.:-) The right question is here:

Attention patient voices around the world: what questions should researchers look at to see if there is a difference between weekend and weekday services in hospitals?

In the UK a major debate is underway about the weekend effect in hospital services: are they less safe, how are they different, etc?  The image at right, from Wikipedia, is one example: the red line shows that death rate for stroke patients improves dramatically when nurse coverage is not close to zero.

I’m on the BMJ editors’ patient panel, and Rosamund Snow, the BMJ’s patient editor, points out that from the patient’s perspective there’s a lot more to look at than death rate.

That’s a pretty crude measure of whether a hospital’s performance is affected, eh? “What are you complaining about? She didn’t die, did she?” What about things like falls, medication errors, access to needed surgery, and on and on and on.

So Rosamund has decided to seek patient thoughts on the subject, hallelujah.

Of course UK experience is important but what are your experiences in any country? Mostly we’re seeking patient experience, but physician experience in other countries could be useful, especially if a system made a change that created a clear difference, better or worse. Both data and anecdotes are welcome.

Most important, though: What questions should researchers look at to see if there is a difference between weekend and weekday services?

“I’m gonna live live live until I die”: new speech about palliative care at #cccc16

e-Patient Dave CCCC title slideI spoke Thursday to a completely new kind of audience: the Coalition for Compassionate Care of California, which is involved in palliative care.

Palliative care is not a synonym for hospice or end of life. It’s about making life with a disease more comfortable, which can be combined with curative care – it does not mean you’ve abandoned hope of a cure. But many doctors, nurses and insurance companies don’t know this yet. Be informed, and speak up! 

Although it was a new topic, the talk was a tremendous success. Here’s the video, which was captured (at no cost!) by @KSAust (Kris Austin) on Twitter using Periscope. (Email subscribers, if you can’t see the video, click the headline to come online.)

It’s about changing our cultural conversation

I compose every talk for the individual audience. There’s often a lot of overlap with previous talks, but this one was very different: I’ve never talked about this subject. It ended with an enthusiastic standing ovation, which always means the message got through.

Thanks to my barbershop singing hobby, especially my chorus, the Nashua Granite Statesmen, from whom I first heard this arrangement of the song that was the title of this talk: “I’m gonna live until I die.” At the start I pointed out that Frank Sinatra introduced this song the year I was born (1950), and at the end I said that we pass our culture down to the next generation: the talk ended with a performance of the song by one of the Harmony Explosion summer choruses, where we barbershoppers pass the tradition along to the next generation.

Seriously, spread the word, because hardly anyone knows: Palliative treatment can be combined with curative ones. It’s not a synonym for hospice, and does not mean giving up hope – it means making it easier to cope with the effects of a disease or its treatment.