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Author Topic: What is the longest a patient has survived on dialysis?  (Read 90048 times)
okarol
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« Reply #75 on: June 16, 2011, 10:03:57 AM »

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!

Thanks so much for the update - best wishes to your dad!  :cheer: :cheer: :cheer:
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Bill Peckham
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« Reply #76 on: June 16, 2011, 10:20:54 AM »

Peter was quite a guy - I got to know him a bit through the Dialysis_Support listserv - but I'm not sure he was the first dialyzor to go through medical school. I think Robin got there first
http://renux.dmed.ed.ac.uk/edren/Patientaccounts/Eady.html
and here http://ihatedialysis.com/forum/index.php?topic=18959.msg327467#msg327467




I don't believe Dr. Peter Lundin was mentioned on this thread.  For those of you not familiar with Dr. Lundin, he was the first person on dialysis to graduate from medical school and become not only a physician, but a nephrologist.  He was on dialysis (by choice) from 1966 to 1996 before receiving a transplant.  Although Dr. Lundin has not been with us for a decade now, his influence on patient advocacy and quality of care issues continue to this day.

A short history of Dr. Lundin:
http://www.aakp.org/aakp-library/celebration-of-life/index.cfm

A tribute to Dr. Lundin by George Harper:
http://www.aakp.org/aakp-library/Peter-Lundin/index.cfm



 
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JerseyGirl1965
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« Reply #77 on: November 06, 2011, 05:23:43 PM »

I just came by to let you all know that my Dad, quite possibly the longest continually dialyzed person in the world, passed away on October 29th, just one day shy of his 71st birthday.  In the end, it wasn't dialysis, his kidneys, his heart issues, his skin issue, or his arthritis that resulted in his death.  He had an acute blood infection, and it was just too much for his body to handle.

A reporter will be doing a story on him shortly...I am looking forward to reading it.
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Bill Peckham
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« Reply #78 on: November 06, 2011, 05:59:40 PM »

I just came by to let you all know that my Dad, quite possibly the longest continually dialyzed person in the world, passed away on October 29th, just one day shy of his 71st birthday.  In the end, it wasn't dialysis, his kidneys, his heart issues, his skin issue, or his arthritis that resulted in his death.  He had an acute blood infection, and it was just too much for his body to handle.

A reporter will be doing a story on him shortly...I am looking forward to reading it.


JerseyGirl I am sorry for your loss. May your father rest in peace.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
ToddB0130
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« Reply #79 on: November 06, 2011, 06:09:52 PM »

So sorry for your loss .... 40 years of continuous dialysis is an incredible achievement.  All my best wishes to you and your family.
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JerseyGirl1965
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« Reply #80 on: November 07, 2011, 09:42:19 AM »

Thank You....I hope his long-run on dialysis will give everyone here hope and a positive outlook on their own future :)
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Meinuk
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« Reply #81 on: November 09, 2011, 06:45:23 PM »

JerseyGirl,

Your father is an inspiration to us all.  I am sorry for your loss.



http://www.northjersey.com/obituaries/133417913_Ed_Strudwick__39_3_4_years_on_dialysis.html

Ed Strudwick, 39 3/4 years on dialysis
Monday, November 7, 2011
BY JAY LEVIN
STAFF WRITER
The Record

Ed Strudwick listened to his doctor and survived an astounding 39 3/4 years on kidney dialysis.

"You just have to sit here for a while and put up with it," the retired steelworker from Wanaque told a reporter in 1997 while undergoing his 11,700th dialysis treatment, at Teaneck's Holy Name Medical Center.

He acknowledged that being hooked to a blood-cleansing machine three hours a day, three days a week beat the alternative.

Mr. Strudwick, whom Renal & Urology News called the Hemodialysis Marathon Man, died on Oct. 29, the day before his 71st birthday. The cause was an infection, said Dr. Robert Rigolosi, a nephrologist and director of Holy Name's department of hemodialysis.

At 31, Mr. Strudwick was diagnosed with pyelonephritis, which led to kidney failure. He became a patient of Holy Name's fledgling dialysis program. Rigolosi was his doctor from the start.

The hospital trained Mr. Strudwick's wife, Gloria, to administer the dialysis at home. She did so for 25 years. For the past 15 years, Mr. Strudwick had dialysis at Holy Name on Monday, Wednesday and Friday mornings. The hospital helped him arrange for dialysis at his vacation destinations.

Rigolosi called Mr. Strudwick a role-model patient.

"He was very compliant about his diet restrictions, he was very good at taking his medications and that's what it takes to survive on dialysis," Rigolosi said.

In October 2007, Renal & Urology News reported that Mr. Strudwick's nearly 36 continuous years on kidney dialysis possibly made him the world's longest surviving dialysis patient.

Rigolosi said he considers Mr. Strudwick and another North Jerseyan, Dorie Heckman, as "probably the longest dialysis survivors in the world." Heckman, of Secaucus, was on dialysis for 40 years and received her treatments at the Rogosin Institute in Manhattan. She died at 55 on July 28. Her obituary in The Record noted that her longevity wasn't a world record because the Northwest Kidney Centers in Seattle in 2010 had honored a former patient who has been undergoing dialysis since 1963.

Whether or not Mr. Strudwick's 39 3/4 years was a world record, a U.S. record or a New Jersey record, he was proud of making it that far.

"Nothing ever bothered him," his wife said. "He used to joke that it was either this or 6 feet under."

To mark Mr. Strudwick's 25th anniversary on kidney dialysis, Holy Name gave him and Gloria a night out in Manhattan — dinner and a Broadway show. Ever the obedient patient, Mr. Strudwick — who was limited to one liter of fluid intake a day — asked Rigolosi if he could order a glass of wine. Sure, the doctor said.

Mr. Strudwick, a Paterson native, retired from Athenia Steel in Clifton in 1988, then worked as a limo driver for a few years.

He is survived by his wife of 48 years...
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Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
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JerseyGirl1965
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« Reply #82 on: November 13, 2011, 11:35:53 AM »

Yes, he sure was....and continues to be, even to those people who don't have to deal with dialysis.  His shear determination is a wonderful lesson for everyone :)
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kitkatz
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« Reply #83 on: November 22, 2011, 05:14:47 PM »

Good for your Dad Jerseygirl.  I am sorry he passed on. Love to your family.
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #84 on: November 22, 2011, 06:53:44 PM »

 :grouphug; :grouphug; :grouphug;

What an inspiration!

Jerseygirl, I'm sorry for your loss.

Aleta
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Wife to Carl, who has PKD.
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
JerseyGirl1965
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« Reply #85 on: November 27, 2011, 10:48:40 AM »

Thank you everyone!
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okarol
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« Reply #86 on: May 20, 2012, 01:11:35 PM »

Diana Doxtader, 63 years old, has been on dialysis nearly 35 years http://ihatedialysis.com/forum/index.php?topic=26576.0
« Last Edit: May 20, 2012, 01:13:05 PM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
okarol
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« Reply #87 on: November 17, 2012, 03:24:59 AM »

Albert Lee Simmons, dialysis patient, celebrates 30 years of survival http://ihatedialysis.com/forum/index.php?topic=27867.0
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
okarol
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« Reply #88 on: May 25, 2013, 01:43:21 AM »

So. Calif. resident Winnie Tapper attains a rare feat: 40 years on dialysis http://ihatedialysis.com/forum/index.php?topic=29028.0
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
noahvale
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« Reply #89 on: May 25, 2013, 06:12:42 AM »

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« Last Edit: September 21, 2015, 03:36:11 PM by noahvale » Logged
karamiel
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« Reply #90 on: July 24, 2013, 04:11:38 PM »

 :clap; I just met this lady at my dialysis who looks very young like mid forties and I was doing my session when her mom approached me and asked what is my secret in looking so positive and happy during and after dialysis. Then she pointed at her daughter who looks smaller than me and said she's been on dialysis for 19 years, she refused transplant twice when they offered it to her because her twin sister died after a kidney transplant so she got scared and never bothered to get one. She's the first person that I've met who has been on dialysis for so long and she is 50, older than me.
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doberose
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« Reply #91 on: July 24, 2013, 06:54:13 PM »

Interesting thread.
To look at it in another way, I'm 83 years old, and started ICH in mid-April 2013.
How many others on this IHD list are in their 80s or 90s, looking forward to many more years on life support HD
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doberose
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babycake
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« Reply #92 on: July 25, 2013, 05:34:14 PM »

there is a patient at my center that
has been on dialyis sense he was 6yrs old and hes now 32

so 26yrs
he has had 2 transplants

the first one failed after 1yr
 and the 2nd one failed
after 1 day for the kidney
was on ice to long

he has been through the wringer
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okarol
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« Reply #93 on: July 25, 2013, 06:04:19 PM »

40 years of home dialysis makes Martha Patrick ‘one of the longest surviving patients in the world' - [Oct. 2012 University of Mississippi Medical Center]

http://bit.ly/1aLS75B
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
okarol
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« Reply #94 on: July 25, 2013, 06:10:58 PM »

Singapore's National Kidney Foundation's longest-surviving patient, Richard Tay, 49, has been undergoing dialysis treatment for 30 years with no hope of a transplant. http://sg.news.yahoo.com/blogs/singaporescene/meet-nkf-longest-surviving-patient-20110320-212953-001.html [Feb. 2011]
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
okarol
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« Reply #95 on: July 26, 2013, 04:53:56 PM »


Celia Kanter who has been on dialysis for over 36 years. 

Interviewed on KidneyTalk [July 2013]

http://ihatedialysis.com/forum/index.php?topic=29406.0

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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
babycake
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« Reply #96 on: July 30, 2013, 12:06:45 PM »

Longest patient I know is Jill she started one month after me July 1977 she as never even been called for a transplant. I had that 6 year break :-\.
What about the Oldest (apart from Kitkatz and Rerun ;) ) a man on our unit was 90 but he only survived 6 months on haemo.


a 90yr old man wouldnt even be qualified for a transplant
there was a guy at my center that was 94 if i recall right that died a few yrs ago
and he said he was to old for one
i cant recall how long he was on dialyis.. i think
it was a few yrs
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happyonhemo
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« Reply #97 on: October 08, 2013, 04:03:25 PM »

I started in the summer of 1989 until my transplant in 1993 so that's 4 yrs. After 6 yrs. I started again in 1999 and I'm still on it. I switched from in-center hemo to NxStage 3 yrs.ago. So I guess that's 14 yrs.so all together that's 18 yrs. I'd say "pretty good, huh?"but I developed b2m amyloidosis because of it and went through 5 carpal tunnel surgeries before figuring out it wasn't carpal tunnel.  I eventually over 5-6 yrs.lost the use of my hands then my balance then my ability to walk.Finally I became totally paralyzed from the neck down. Taking control of my own health care or from a miracle, I have been able to regain some movement but if I had known this was a possibility from long-term dialysis, I would have tried much much harder for a transplant or been pro-active about this disease. Either way, I'm grateful or every day I'm given.
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okarol
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« Reply #98 on: October 08, 2013, 04:07:56 PM »

Hi Happy,
I had never heard of b2m amyloidosis before this. Is it pretty rare? It sounds like you've been through a lot. Thank you for sharing your story.  :waving;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
babycake
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« Reply #99 on: October 25, 2013, 08:23:32 PM »

 Home dialysis nurse Vanda Echols, left, discusses medications with Martha Patrick.
40 years of home dialysis makes Forest woman ‘one of the longest surviving patients in the world’

By Gary Pettus
The story of Martha Patrick’s disease is carved in the landscape of her rust-brown limbs – a ridged, flesh-and-blood geology resembling a bird’s-eye view of the Grand Canyon at sunset.

This is the spoiled “topsoil” of her arms, which Patrick has pierced so many times, it has played out, forcing her to plant the needle in her legs.

The scarring is the price of long-term home hemodialysis using an artificial kidney, which has purchased Patrick’s life for more years, perhaps, than for anyone else.

 “Forty— it’s just a number to me,” said Patrick of Forest. “That’s just my life. I don’t think it’s that great.”

That’s not the opinion of Dr. John Bower, 80, a semi-retired nephrologist who has not fully retired, in part, out of his regard for her.

“You can’t just walk off and leave a patient you’ve been seeing for 40 years,” said Bower, professor emeritus at UMMC.

Nor is it the opinion of Dr. Christopher Blagg, emeritus executive director of Northwest Kidney Centers in Seattle.

“Forty years on home hemodialysis is, as far as I know, a record,” said Blagg, a home hemodialysis expert.

The record of survival for anyone with kidney, or renal, failure is 49 years, said Blagg, whose advocacy in the 1970s helped usher in Medicare coverage for dialysis and kidney transplantation.

Patrick, who’s never had a transplant and has survived this long strictly on home hemodialysis “is one of the longest surviving patients in the world,” Blagg said.

She has survived “end-stage renal disease (ESRD)”: permanent kidney failure, which must be treated by a transplant or artificial filtering – dialysis.

For Patrick, it started in 1972, with nosebleeds, loss of appetite, insomnia.

“I’d sleep during school, I was so tired,” she said.

Born with abnormally small kidneys, she had outgrown them by age 15, like an old pair of shoes.

Her kidneys were working at 10 percent of normal capacity; wastes piled up in her blood, like a biotic landfill.

Untreated, she would have died.

“Martha’s mother said, ‘I want her to live,’ ” Bower recalled.

 Dorothy Sanders Patrick learned how to use an artificial kidney machine so Patrick could do home dialysis.

Martha Patrick’s own training served her well after her mother died in the late 1980s, ironically, of kidney cancer.

Later, her sister, Linda Leclerc of Forest, served as Patrick’s “third hand.”

“It’s the concept of the ‘dumb neighbor,’” said Bower, who gives Patrick monthly checkups at the Jackson Medical Mall’s UMMC Outpatient Dialysis Unit.

 “We try to make the training so simple, even your dumb neighbor could do it. The key is that patients accept responsibility.”

Some patients choose peritoneal dialysis, in which a hollow tube is surgically placed in the abdomen; a material called dialysate absorbs toxins before they’re drained from the body. This, too, is a home treatment but wasn’t an option when Patrick’s kidneys failed.

Hemodialysis, her choice, requires a fistula, a surgically created access joining an artery with a vein. Patrick, who has had several fistulas, is among the 1 to 2 percent of dialysis patients who dialyze at home rather than at a center.

Of the more than 400,000 in the country, only about 6,000 do home dialysis, which would cost several thousand dollars yearly without Medicare, Bower said.

“At a dialysis center, you schedule your life around dialysis. Do it at home, and you schedule dialysis around your life.”

During each session, Patrick inserts into her fistula two needles attached to plastic tubes that connect them to the dialyzer, or artificial kidney, supplied by the center.

One needle removes the blood from the body so it can be pumped through, and scrubbed by, the machine. The clean blood returns to the body through the second needle.

Calculating at least two piercings per shift, Patrick has stuck herself some 13,000 times. “If the first stick is a bad one, I stick myself again,” she said.

 For the four-a-week, 3 1/2 –hour sessions, her bedroom is her dialysis unit. “I get in bed and watch TV at the same time,” she said.

Patrick has turned down transplants, she said. “I didn’t want a big surgery, and I’ve been doing good.”

But because of dialysis’ limitations, she has high blood pressure, hardening of the arteries and metabolic bone disease. She must use a walker.

“The kidney also controls blood pressure and bone-material content in the body,” Bower said. “The artificial kidney can’t.” Medication has to.

“Transplants improve the quality of life,” Bower said, “but you need a donor, and the patient will probably need more than one during a lifetime.”

After years of dialysis, Brenda Dyson received a kidney from each of her two sisters. “Which is better, a transplant or dialysis? It depends on the individual,” said Dyson, Community Outreach Coordinator for Network 8 in Jackson, which serves kidney patients in Mississippi, Alabama and Tennessee.

“When I first met Martha, I was amazed that someone would look that good and do that well on dialysis. She’s an inspiration to everybody.”
 
On May 22, Patrick reached the 40-year milestone, a month following her retirement as a part-time library book-shelver.

“She’s responsible, takes good care of herself, eats right,” said her sister Leclerc, 63. “That’s why she’s done so well all these years.

“I don’t care what she says; anyone who can do what she’s done, that’s impressive.”


End Stage Renal Disease (ESRD) Patients
2010 (population affected as of Dec. 31)

MISSISSIPPI
Per million
Center hemodialysis: 5,643
Center self hemodialysis: 0
Home hemodialysis: 79
Continuous ambulatory peritoneal dialysis (CAPD): 187
Continuous cyclic peritoneal dialysis (CCPD): 340
Transplant: 1,594
Unaccounted for by the USRDS : 18
Total: 7,861

Patients alive with ESRD
Per million
1980 (as of Dec. 31): 682
2010 (as of Dec. 31): 7,861

Source: 2012 United States Renal Data System
(www.usrds.org/reference.aspx)



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