What is the longest a patient has survived on dialysis?

[kristina]

Hello...

I was looking around Yahoo yesterday about the length of time people have been on dialysis.  I decided to pop my Dad's name in and it led me to here.  You see...if you go back to the very beginning of this post, where the Administrator had listed the names of people and their length on dialysis, you will see Edward Strudwick at the very top.  He is my Dad.  He is nearing 40 years now of continuous dialysis.  He celebrated his 70th birthday last Fall.  While he has other health issues now, dialysis was never something that kept him down.  He married, worked rotating shifts at a steel factory, raised two daughters, owned and maintained a house, and worked hard every day until he retired.  Even then, he went to work for my cousin driving limos.  My Mom was trained to do the dialysis at home for the first 25 years.  Once Dad retired, he "retired" her and now goes to the hospital three times a week.  I never remember a time when there wasn't dialysis in our lives.  He learned to live with it, as did we.  It never kept him, or us as a family, from doing anything we wanted to do.  He followed doctor's orders and has lived a full and happy life.  Today, he enjoys watching his favorite team play baseball, doing his crossword puzzles, going online, and spending time with his four grandchildren.  He gets around on a scooter, as due to his other health issues, he can not safely walk around anymore.  He also enjoys riding around the neighborhood visiting with the neighbors.

Well...that's about it.  Just wanted to register and give you an update on Dad...have a great day!

... Has it been medically researched why some dialysis patients are able
to keep alive for many years whilst many other patients don't really succeed at all ?
 
Is dialysis-survival connected to age, location, genetics and/or to diet
or is it connected to the kidney disease they were suffering from in the first place,
or is it connected to anything else ?

I have been wondering about this question
and I have been trying to research about it on the Internet
but I  could not find any answers.
Does anyone know more about this?

Thank you from Kristina.

[noahvale]

... Has it been medically researched why some dialysis patients are able
to keep alive for many years whilst many other patients don't really succeed at all ?
 
Is dialysis-survival connected to age, location, genetics and/or to diet
or is it connected to the kidney disease they were suffering from in the first place,
or is it connected to anything else ?

I have been wondering about this question
and I have been trying to research about it on the Internet
but I  could not find any answers.
Does anyone know more about this?

Thank you from Kristina.

A few thoughts/observations from someone who has been dealing with ESRD since 1978 (22+ years hemodialysis/13+ years transplant).

Effects on longevity:

1)  No co-morbidities
2)  Age
3)  Hemodialysis over peritoneal and home hemo over in-center
4)  well-working fistula
5)  supportive nephrologist - a true patient advocate
6)  taking control of one's treatment
7)  adequate treatment regimen
8   controlling/minimizing secondary medical complications
9)  acceptance that esrd is a life-long condition - not giving in to being a victim
10) understanding dietary limitations and the concept of moderation
11) while understanding a healthy degree of O/C is necessary, a life outside dialysis is important
12) staying active
13) stable home and support system
14) luck

[obsidianom]

... Has it been medically researched why some dialysis patients are able
to keep alive for many years whilst many other patients don't really succeed at all ?
 
Is dialysis-survival connected to age, location, genetics and/or to diet
or is it connected to the kidney disease they were suffering from in the first place,
or is it connected to anything else ?

I have been wondering about this question
and I have been trying to research about it on the Internet
but I  could not find any answers.
Does anyone know more about this?

Thank you from Kristina.

A few thoughts/observations from someone who has been dealing with ESRD since 1978 (22+ years hemodialysis/13+ years transplant).

Effects on longevity:

1)  No co-morbidities
2)  Age
3)  Hemodialysis over peritoneal and home hemo over in-center
4)  well-working fistula
5)  supportive nephrologist - a true patient advocate
6)  taking control of one's treatment
7)  adequate treatment regimen
8   controlling/minimizing secondary medical complications
9)  acceptance that esrd is a life-long condition - not giving in to being a victim
10) understanding dietary limitations and the concept of moderation
11) while understanding a healthy degree of O/C is necessary, a life outside dialysis is important
12) staying active
13) stable home and support system
14) luck

Well put and right on target. I may add genetics too.

[kristina]

Thank you noahvale and obsidianom for the information,

it is very much appreciated.

Kind regards from Kristina.

[Bill Peckham]

I'd add exercise to the list - not necessarily gym routines as much as daily movement. Just walking 30 minutes a day for instance captures a significant portion of the available benefits of exercise.

[kristina]

Thank you Bill Peckham for your thoughts
about longevity whilst on dialysis.

Kind regards from Kristina.
 

[babycake]

there was a patient
at my unit
that had been
on dialyis
sense he was 6yrs old
and i was just told  that he died  sometime
in nov
he was 32yrs old
he was a fighter
he had 2 differnt transplants
but he had rare blood
the first transplant lasted
only a day/half for it was on ice to long
the 2nd last a year/half


R.I.P
TO EUGENE

[okarol]

Small role in movie shines a bit of spotlight on Jack Reynolds, who has lived 39 years on dialysis [Dec. 2013] http://ihatedialysis.com/forum/index.php?topic=30117.0

[okarol]

Man on kidney dialysis for 30 years sees role as inspiration to others - For more than half of his life, Frank Hall has been on dialysis, it started when he was 17 years old.  [June 2014] http://ihatedialysis.com/forum/index.php?topic=31251.0

[babycake]

there was a patient
at my center
that was on dialyis
for 26yrs

kathy started
when she was 14-15yrs old
she died 2 days before
her 40th birthday

kathy had a bf that
died several yrs prior
they were together
for 19yrs before he died

there now together again

prayers to kathy

[okarol]

Zee Whitaker is still going today, three times a week. After 25 years, she is the longest running dialysis patient in Ohio [Feb. 2015] http://ihatedialysis.com/forum/index.php?topic=31919.0

[okarol]

Delia McAteer, now 50, has been on a dialysis machine for more than 33 years and is believed to be the longest surviving UK patients to have had such treatment continuously. [Mar 2015]http://ihatedialysis.com/forum/index.php?topic=31928.0

[Riki]

I have a friend in Nova Scotia... she started dialysis for the second time when she was 10 years old.. she lost a transplant.. she's been on dialysis for 24 years...  We were roommates in the children's hospital I went to.. she adopted my family, so she's kind of like a little sister to me..

[Rob Brydon]

Starting my 40th year on dialysis with only 2 months off back in 77 and 79 for two transplants that both rejected me. Been on IHD before but not for a few years. I have always done home hemo here in New Zealand and am told by docs that it's my attituide that keeps me going...ha. Heart attack and 3 stents 2 years ago and a year later a gall bladder that tried to kill me, but I made it. Also in 2012 I made his audio visual which is on U tube and 13 minutes long. You might like to look and share...cheers all..R
https://www.youtube.com/watch?v=JMXnyZyuVz4

If that doesn't open go to U Tube...Rob Brydon dialysis

[PrimeTimer]

Starting my 40th year on dialysis with only 2 months off back in 77 and 79 for two transplants that both rejected me. Been on IHD before but not for a few years. I have always done home hemo here in New Zealand and am told by docs that it's my attituide that keeps me going...ha. Heart attack and 3 stents 2 years ago and a year later a gall bladder that tried to kill me, but I made it. Also in 2012 I made his audio visual which is on U tube and 13 minutes long. You might like to look and share...cheers all..R
https://www.youtube.com/watch?v=JMXnyZyuVz4

If that doesn't open go to U Tube...Rob Brydon dialysis

THANK YOU Rob for sharing this! Made me feel every emotion there is to feel, mostly what one feels when working towards triumph. Your photography is beautiful and absolutely speaks. Thank you!

BTW: I found your photography site. Awesome photos! Love them all but especially "Cowboy At Work". Thanks again for sharing your video, inspiration and spirit.

[kitkatz]

40 years is along time on dialysis. Congratulation to you on making it so far into this adventure.  I am hitting 17 years in November of 2015.  I will celebrate by bringing a cake into share at dialysis that week.

[PrimeTimer]

I shared Rob Brydon's youtube (see the link to it in his post) with some in-laws and finally, FINALLY they are starting to show signs of understanding what home-hemo is and basically dialysis in general and what my husband is going through. In the past I had sent them numerous other youtubes and educational articles and even tried explaining things in laymen terms but nope, they just didn't "get it" but I tried one more time and sent them Rob's photo-documentary and suddenly, they are starting to come 'round to the idea.

Thanks again so very much, Mr. Brydon for sharing your video documentary with us! It's been very powerful in more ways than you know!

[okarol]

World’s longest surviving kidney patient dies
Mercer Island resident Nancy Spaeth went on dialysis at age 18 and received four kidney transplants.

By Hannah Saunders • February 20, 2022 11:38 am

Nancy Spaeth was a nurse, mother, patient, patient advocate, dialysis pioneer, kidney transplant recipient and volunteer.
After developing kidney problems as a child, Nancy Spaeth, the world’s longest surviving kidney patient, died on Jan. 14 at age 74.

“It takes a very big personality to deal with kidney failure and being on dialysis. It takes an even bigger personality to step across the line of dealing with your own health issues to help and inspire others to deal with theirs,” said Katy Wilkens, who was a student dietician at Northwest Kidney Centers in 1975 when she first met Spaeth. “Nancy was a petite person physically, with the biggest personality to help others that I have ever known.”

Nancy began seventh-grade in 1959, which was when she noticed that brushing her thick, wavy, blonde hair became difficult. It also became difficult for the relay runner to race, and one day she noticed that her urine was brown.


After a visit with her doctor, and upon further diagnostic testing, she was diagnosed with Bright’s Disease, or glomerulonephritis. Bright’s Disease causes inflammation and damage to the portion of the kidneys that acts as a filter, and Spaeth’s doctors believed it was caused by numerous yellow jacket stings she had received while hiking in the Cascades the previous summer.

To rid her body of the illness, she was given high doses of prednisone, as well as nitrogen mustard, which caused her to slip in and out of consciousness for days following the treatment.

During fall of 1965, she began attending the University of Arizona, but by February 1966, she grew tired of vomiting in planter boxes outside of her physics class. Spaeth moved back to Seattle that year, continued her studies at the University of Washington, then transferred to Seattle University.

At the time, treatment for chronic kidney failure was still young, and patients of dialysis would need something called a Scribner shunt. At Seattle Artificial Kidney Center, a community panel known as the Admissions and Policy Committee decided which patients would receive dialysis. Spaeth referred to this panel as “The Life and Death Committee.”

The committee process consisted of a visit with a psychiatrist and psychological testing. Spaeth’s family also needed adequate insurance to afford the $30,000 cost. The committee was looking for individuals who could recover and go on to work or contribute to society, according to Spaeth.

Spaeth was selected by the committee to receive dialysis, which she began at the Seattle Artificial Kidney Center on Dec. 26, 1966. Nancy spent a year and a half of receiving in-center dialysis while she was a full-time college student and went on to receive three months of training to begin home dialysis.

She described herself as a normal student who went to parties with friends and dated men, but on the flipside, went to bed on dialysis three nights a week for eight hours, and avoided salt at all costs.

In 1970, Spaeth graduated from Seattle University with a bachelor’s degree in education. Two years later, she received her first kidney transplant from her youngest brother, Charlie, during his spring break from Stanford University.

Spaeth got married and had two children: her first, Joshua, in 1974, and her second child, Sarah, in 1976. She worked as a substitute teacher for K-12 students in the Forks School District, but returned to college to earn a nursing degree in 1979.

In 1979, Nancy Spaeth got food poisoning and lost her kidney transplant. She also divorced from her husband that year.

She received her second transplant, a cadaveric transplant, in 1981, but it failed in 1986, and she went back on dialysis.

Throughout her life, Spaeth participated in numerous research studies. She was accepted into an erythropoietin study at Northwest Kidney Centers (NKC), which made her body feel better, and she became more active. By 1989, the Food and Drug Administration approved the use of Epogen.

Spaeth received her third kidney transplant in 1989, which she lost in 1995 due to chronic rejection. By 2000, Spaeth received her fourth and final kidney transplant.

Not only was Spaeth a patient, but she was also a supporter of the world leading dialysis provider, Northwest Kidney Centers. She served on the Foundation Board and Board Quality Committee.

Spaeth was a pioneer and an activist when it came to kidney disease. She testified on behalf of kidney patients to both the state and federal levels.

“Nancy was a force for good, a constant advocate and friend to kidney patients,” said Peter Raffa, former Executive Director of Northwest Kidney Foundation. “We went onto educate our elected officials in both Washingtons. Raising more than a few dollars along the way. Nancy singing the praises of NKC, her personal story, love for her family and nursing career. Nancy will be missed by all of us, but oh what a life well lived. NKC’s mission personified.”

https://www.auburn-reporter.com/life/worlds-longest-surviving-kidney-patient-dies

[iolaire]

That was a good run.  Thanks for sharing this and the other stories.

[okarol]

That was a good run.  Thanks for sharing this and the other stories.