Dialysis in Wonderland

[Bill Peckham]

Yesterday I interviewed John Warner for over three hours at his home in Richfield Utah. It was a great experience but also depressing.

John was the administrator of the incenter/home dialysis program at the University of Utah through the '70s and without ever meaning to by the '80s he was running what amounted to an adventure travel company for dialyzors. This photo shows an incenter dialyzor using a wearable artificial kidney, in the ‘70s, it’s in routine use, out in the wilds of the American west and her treatment was reimbursed by Medicare. Has the provision of dialysis progressed in thirty years? Depressing.

I really enjoyed talking with John, listening as he recalled what has to be a high water mark in the provision of dialysis, a vision of health that is not even on the table any more. He has great stories. He took Dr Peter Lundin down the White Salmon, the River of No Return – they flipped in an inflatable kayak together. He took ten dialyzors at a time through the Grand Canyon. He forced Medicare to allow reimbursement outside of the unit for things like dialysis camps for kids that are only open briefly each summer. Since 1978 these camps have been allowed and it is due in no small part to John Warner and the people who believed in Dialysis in Wonderland. How it all came to be is a great story. It was the ingenuity of Kolff and the other bioengineers at the university that made the dialysis part of Dialysis in Wonderland  technically feasible. And it was Kolff’s personal support that gave the program bureaucratic space to thrive outside the lines. It was John who got everyone there and back safely.

Of course, I wanted to know about his Grand Canyon trips. They did three. He didn’t have the exact dates but the details of the 1983 trip match the descriptions of what it was like rafting the Colorado during the highest flow in generations, June 20 to 25, 1983. John remembered leaving Lee’s Ferry when the river was flowing 40,000 cfs, over twice the max flow of the river on my trip. He recalled the helicopters dropping notes, warning them to camp higher. And he remembered the debris floating down from where they had come, giant water that they had just experienced, they knew it was remnants of disasters upstream. We can say this: In June 1983, when the Colorado was flowing at 100,000 cubic feet a second through the Grand Canyon, its greatest flow since the construction of the Glen Canyon dam in 1960, there were 10 incenter dialyzors over 100 miles down canyon having the time of their lives.

That was 30 years ago.

[Bill Peckham]

Here's an updated version of Kolff's WAK in use, down river circa 1982-1984. He also had two reels of 16mm film, one labeled 1982 Grand Canyon and one I think was a film he showed when he was invited to speak. Both are being converted to digital and should be available, I hope soon.

[willowtreewren]

This is both inspiring and discouraging. Where are the wearable kidneys today? Look at the size of that portable kidney! Amazing. With the prevalence of kidney disease one would think these would be more available now.....

Aleta

[Zach]

Great story!

Why do you suppose the great lack of innovation since those days?
University of Utah no longer interested in dialysis and kidneys?
No Dr. Kolff to lead the efforts?

Or is it the composite rate?

[jeannea]

He sounds like a really interesting man. Thanks for sharing.

[Bill Peckham]

Great story!

Why do you suppose the great lack of innovation since those days?
University of Utah no longer interested in dialysis and kidneys?
No Dr. Kolff to lead the efforts?

Or is it the composite rate?

 

The composite rate did cut reimbursement but in the end he told me it was medical liability insurance. For the first six or eight years the program was run through the University and was not singled out for any special insurance requirements. Over time the University's policy constrained coverage to just activities occurring on campus and financing the rider for Dialysis in Wonderland grew to be the main barrier to continuing the program.

I asked him over the 100  trips he organized and led did anyone make a claim? Did anyone ever sue? No. I don't think it would have occurred to any one. (I'm quoting from memory we'll be able to check the video for the complete quote at some point. I"m not sure how or when the three hours of video will be available, we used three camera and two mics, so there is a lot of editing to do).

One woman, from Seattle died traveling back to Seattle. Her doctor did not indicate that she had severe heart disease on the application forms to go and when they got to the US Virgin Islands she began having trouble. They got her to the closest dialysis unit (they would have an agreement in place wherever they went) and medically evacuated her on a Lear jet, but she died in route. No one blamed the program.

[okarol]

  Interesting!

[Bill Peckham]

Great story!

Why do you suppose the great lack of innovation since those days?
University of Utah no longer interested in dialysis and kidneys?
No Dr. Kolff to lead the efforts?

Or is it the composite rate?

I think the men, the type of men they are/were, Kolff and Warner, are also missing from today's programs. John graduated High School in 1943. He said "They were drafting back then so me and a buddy enlisted, in the Marines" He and his buddy fought in the Pacific for two years, all the way through together - he mentioned his buddy died last year but they lived to be 87 together. We all should know Kolff's story - he built his original dialysis machine, the first one in history, in occupied Holland from parts scrounged from the Nazis (I believe it was a Messerschmitt). Men like that had little concern for bureaucratic rules and I think they understood something important about life, the importance of enjoying life, of living life well.

[MooseMom]

Wow.  Just wow, on so many levels.

[Bill Peckham]

Check out Dialysis in Wonderland - The Movie

http://youtu.be/4tW86qDqiIM

[Zach]

Check out Dialysis in Wonderland - The Movie

http://youtu.be/4tW86qDqiIM

Thank you!!
 

[Rerun]

I see what you mean.  Technology stopped in 1980.  Probably more money in keeping us down.

The banjo music reminded me of Deliverance....  LOL

[kristina]

... When Rerun mentioned that the banjo music reminded her of  “Deliverance” ...
I thought at first she meant a variation of Alan Stivell’s  “Hollvedel + Delivrance”...   

...Thanks Bill, the film is very encouraging and inspiring and thanks for sharing,

Kristina.

[Hemodoc]

Thanks Bill, just proves the point that renal disease truly is an orphan disease bypassed by modern technological developments. If they could do that in the 1980's, we are now over 30 years behind.  Until the dialysis industry changes the paradigm to keeping patients alive to make money, we will fail to see further advancements any time soon.

[Bill Peckham]

It is frustrating Peter. Frustrating in so many ways. We have this system because this is the system we have. The conventional dialysis rut is so deep and steep walled that few can stay out, not dialyzors, doctors or payers.

[amanda100wilson]

Peter, my sentiments exactly.

[kristina]

... when my kidneys first failed in 1971 the doctors at the hospital were very enthusiastic and idealistic.
... They certainly tried very hard to keep me alive and get my kidneys back to function again...
and they were very proud when they realized they had succeeded and then I was referred to the professor (a heart specialist/surgeon)
whose “hobby” was preventative medicine and he advised me on my vegetarian diet... and a life-style to keep my “two little fighters” functioning etc.

Perhaps at that time doctors were very inspired by the medical break-through of Christiaan Barnard when he performed the first heart transplant
and perhaps the pharmaceutical industry was not yet so powerful in the 1970’s and everything was geared to keep patients as well as possible ?

These days not much seems to have really improved for kidney patients...
I came across patients who were struggling with dialysis in the 1970’s and I still come across patients struggling with dialysis now.
... I came across failed kidney transplants then and I still come across failed kidney transplants now...
...  Not much of an improvement for kidney patients, if one thinks how much time has gone by ...

... Perhaps some of the medical methods have become more elegant these days...
but the fundamental medical problem for kidney patients seems to have remained the same...

I would have hoped that perhaps kidney charities etc. could really speak out for kidney patients and assist them more  ...