How to Live Long With Kidney Failure Webinar

I’m particularly curious in how the Life and Death Committee worked before renal replacement therapy was provided for all. Hiw many people were interviewed? How many were accepted? Did patients know about others being considered? What were the psycological pressures did one have knowing a life or death decision was being made about you and you had very little control over it?

There is an article up on Slate that talks a bit about the Seattle Experience (my blog post on the article is about the “paying donors” part of the article). The article gets some details of the Seattle Experience wrong. Swedish Hospital supported the early kidney center by housing the first unit and financial support during the early years but Swedish did not set up the committee. The whole thing was the brain child of Scribner and Haviland.

Here is an authoritative source of what went on in Seattle during that period - Dr. Blagg. His The History of Home Hemodialysis: A View From Seattle includes some discussion of the committee:

John Darrah, who was the clergymen and later second chairman of the committee, did not feel they were playing God, but that, to quote another member, there was a different perspective. “We are not asking you to decide who will die, This is already determined. Without treatment, needy patients will die within a few weeks. We are asking you to help decide who will be given the opportunity of extended life.” They were responding to “a request and need and, without guidelines or precedent,were striving to do an honest and honorable job.”

In 1962 the SAKC had “limited facilities and limited financial backing and nowhere else to turn for help, we experienced (many of us for the first time) the choice of taking patients on a first come, first served basis or by means of a “super-triage” system. We elected the latter course.”

The original medical criteria were very strict, but relaxed with time. Patients were restricted to those resident in the State for at least 6 months because of the need to justify the use of local funds for treatment and to prevent patients coming from elsewhere in the country. Medically suitable patients were screened by a psychologist, a social worker and if necessary a psychiatrist. Even so, there were quite a number of occasions when patients judged suitable still had to be turned down because there was not a place or funding available.

There was a relitively brief - 4 to 8 years - when dialysis was strictly rationed in Seattle. By the time Medicare stepped in, The State of Washington already covered most people one way or another.

In regard to the Life and death committee.
I was young and very sick at the time. I have no idea what my creatinine was because no one told us, then. When we are young, death is hard to imagine ad I did not think about it. I’m sure that my mom, dad, brothers and sister-in-laws worried about it more that I did. Much of it depended on how many people needed dialysis at the time. Sometimes there was a line witing for a decision and sometimes there wasn’t. We did not know if there were others. When I started most of the patients were 40 something business men with families. There were about 25 of us. A lot of it depended on the money. After I was dialyzing at Eklund Hall, there was a big fund raising mission for a young woman named Leslie, in Everett, 30 miles north of Seattle. it was called the “Let Leslie Live” campaign. Money was raised an not long after, she was dialyzing in a bed next to me.
I do remember that my sister-in-law said to me once, “You now that you may not be chosen”. i never had any doubt that i would but i did have to forgive her for that remark…she was only in her 20s.

I met John Darrah in the early 90s when I had my 3rd transplant. The NW Kidney Center put us in a room together, shut the door and let us talk. he was much older, then and I don’t remember that he said anything that made me take note or seemed profound. I do, however, have a picture of us at a table.

Hi Folks

I was not able to login to the site. Had problems and still am with the site seeing my usernamer and password.

Did the chat take place and will anybody talk on things (I would love to hear more of Nancy’s story, age etc anything Nancy is willing to share). Are there others who went though this and are willing to tell there story? Is there a site that already has the rest of the story. Bill will the site you noted give more on some of the people?

Must run , but look forward to reading more on this…

Best to All
Bob OBrien

Hi Bobeleanor,

I’m sorry to hear that you had problems logging in. WiZiQ is upgrading (we hope) their capabilities, so they sent everyone who was registered for the site a message that you had to set a new password. It was terribly confusing. Anyway, we DID have the session, and it’s already recorded, so if you missed it, you can see it by clicking the original link: http://www.wiziq.com/tutorsession/session.aspx?JuX%2BgH%2B2GbY7p9L4QdD4s1aNwBBPIdRNELKfyI2GB8kNKYeBsBfSjntzsKMiYfV61BL1MwKet9E%3D and then clicking “View Recording.”

Of course, you’ll still have to set a new password first, but when you get that set, you’ll be all ready for Dr. Agar’s part 2 in July (date TBD).

Loved the Webinar! great to hear Nancy’s story. 42 years of kidney disease and still kicking butt (as you Americans say) Was particularly interested to hear that Nancy is a fellow FSGS ‘sufferer’. I would love to hear more on whether that was the cause of her losing 3 transplants but I know that wasn’t in the spirit of the topic .

But well done all those involved in the Webinar.
Cheers
Mel

Hi Mel,

I know that she got food poisoning and that was the cause of losing one of the transplants, but am not sure about the others. Nancy has registered for this site now, so perhaps she’ll check back on that.

Hi Folks

Got to see web talk from the other night. Had a # of issues getting login till just today (am east cost).

Rich ,
Did you get your questions answered? I watched and listened(recorded) but don’t think that part of the early yrs. were talked on, I’ve seen reports that (could be wrong) in the 60’s or at least 1960 only 11,000 people had kidney issues? Maybe more had ,just did not get it called that or did not live long ? I havn’t seen if dialysis was open nation wide in the early yrs or just a few cities?

As to Nancy’s story I had wondered as to her family life line. And Nancy did speak a bit on her folks and family. Would have liked to have heard more about the early yrs and if her family played a major role in getting though the down times? I will try and google , Nancy name to see what is out there?

Overall the web talk went well , had some bugs but I saw that updates are on the way?

thanks
bob obrien
QUOTE=Rich Berkowitz;16151]I’m particularly curious in how the Life and Death Committee worked before renal replacement therapy was provided for all. Hiw many people were interviewed? How many were accepted? Did patients know about others being considered? What were the psycological pressures did one have knowing a life or death decision was being made about you and you had very little control over it?[/QUOTE]

I really enjoyed the webinar and was glad I got to participate in this one. Nancy has overcome quite a few challenges and is proof that we can all do it. We don’t have to give up, roll over and wait for the grim reaper. Fight back! It was truly inspiring…at least to me.

Hi Bob,
The following link will take you to an article about me. You will see a list of pictures but up on the right it will say full text. That will take you to the article. This will give you some information about my family and their support. I had 2 older brother and a younger one who were very generous and helpful to me.

http://ndt.oxfordjournals.org/cgi/content/full/gfl612/DC1

This Link:
http://www.washington.edu/alumni/columns/sept96/back_pages0996.html

is about Belding Scribner and some of the early days…

Seattle was the first out of hospital diaysis center in the world and doctors from all over the USA and the world came to the University of Washington to work with him. Many still come here to study nephrology. I am honored to be able to meet one on one with all the Renal fellows who come here after residency to learn more about dialysis and kidney disease.

As I travel to Dialysis Seminars, I meet others who tell me about other programs that began the pop up around the U.S. and Europe after Scribner proved that it could be done.

Please feel free to ask me specific questions.

LeRoy,
I’m so glad that you enjoyed the webinar. Please feel free to ask me any questions.
Keep your great spirit!
Nancy

Nancy
Thanks so much for posting the link to that oxford Journal article. It has filled in some of the gaps in your amazing life story and left me with a great feeling of hope for the future for all of us!
Cheers
Mel

Mel,
I’m so happy that I can give you hope.
With fond regards,
Nancy

Hi Folks

Thanks Nancy, the one page I had seen ("“Dr. Belding Scribner (right) pioneered the use of dialysis”")

The Great thing that You did is put a Face and a Life to something that for a # of reasons has not and I’m not sure if it will get the notice it needs. I can only hope that at some day we will see Ads on TV that has people talking about being on dialysis and getting there dialysis supplies from XYZ company, like we see for for people with other health conditions. Having dealt and still dealing with spina bifda I see no need for every person on dialysis to be treated like the other. Which is what I have found to be the case, that everyone on dialysis wears the same shore size.I can only go on what I’ve seen and heard first hand.

I look at dialysis as a Tx or meds a person need to take like high blood pressure etc. I had looked at transplant, but in my area there are only limited # of places that can do the transplant. None of which are close and having been though more than my share of operations. I see no real reason not to just do my Tx take my meds (6 nights a wk).

thanks
bob obrien

Dear Bob,
I understand your reluctance to have more surgery or a transplant and I believe that running over night 6 nights a week is a very healthy way to dialyze. I wish more people would do it.

Nancy

[quote=Nancy Spaeth;16194]Hi Bob,
The following link will take you to an article about me. You will see a list of pictures but up on the right it will say full text. That will take you to the article. This will give you some information about my family and their support. I had 2 older brother and a younger one who were very generous and helpful to me.

http://ndt.oxfordjournals.org/cgi/content/full/gfl612/DC1

This Link:
http://www.washington.edu/alumni/columns/sept96/back_pages0996.html

is about Belding Scribner and some of the early days…

Seattle was the first out of hospital diaysis center in the world and doctors from all over the USA and the world came to the University of Washington to work with him. Many still come here to study nephrology. I am honored to be able to meet one on one with all the Renal fellows who come here after residency to learn more about dialysis and kidney disease.

As I travel to Dialysis Seminars, I meet others who tell me about other programs that began the pop up around the U.S. and Europe after Scribner proved that it could be done.

Please feel free to ask me specific questions.[/quote]

[B]Your a soldier! I see your family had a great impact on the success and wellbeing. The support from family is one of the things I see many patients with chronic illnesses gives them strength to continue ahead.

Thanks for sharing your story,
Gus

P.S. I have 30 years since losing my kidneys and starting dialysis … like you, the family support was there. Big thanks my care-team as well, they are family too.[/B]

Gus, long time no see! We miss you around here. Folks were wondering if you were okay. Please stop by & see us often. :slight_smile:

I’ve been enjoying the Second Life!! hehehe :stuck_out_tongue:

I figured maybe you got lost in there! Have you had a chance to set up any HHD clinics, as long as you’re there? :wink:

I am very busy into other projects there so I don’t have the time, but you can do that there. Check out some of these links on how you can do just that.

http://slhealthy.wetpaint.com/?t=anon (Go here and get listed!)

Finding Health Information, Community Online
(Recent News Article)

Other links of Interest…
Second Life HealthCare
Second Health
Health Loves a Second Life
Blood Tracking
ColdWell Banker in Second Life

P.S. Its a digital life, hehehe