I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: okarol on August 29, 2008, 05:11:40 PM

Title: What is the longest a patient has survived on dialysis?
Post by: okarol on August 29, 2008, 05:11:40 PM
What is the longest a patient has survived on dialysis?

Info gathered on the internet August 2008.


•   Ed Strudwick, age 67, has spent nearly 36 years on hemodialysis – it may be a world record. (Oct. 2007) http://www.renalandurologynews.com/The-Hemodialysis-Marathon-Man/article/58020/
•   Brian Tocher has been 40 years on dialysis (interspersed by two transplantations.) (2008) http://www.brian-tocher.bravehost.com/
•   Patricia LeBlack, in her 39th year of continuous kidney dialysis, may be the longest-surviving kidney dialysis patient in the world. (Sept. 2006) http://www.guardian.co.uk/print/0,,329581861-103680,00.html
•   Dr. Robin Eady, the longest-surviving dialysis patient in the world, began the treatment in 1963 at age 22 until he received a kidney transplant in 1987. (June 2003) http://www.alexkingsbury.com/2003/06/22/ex-dialysis-patient-honored-for-ideals/
•   Ron Hasegawa - For three decades, since he was 19 years old, he has been on a dialysis machine. (Aug. 2001) http://www.mv-voice.com/morgue/2001/2001_08_10.hf10.html
•   Vern El Verno Del Congo Best had been on dialysis for 28 years and was Barbados' longest surviving kidney failure patient. He was 69. http://www.nationnews.com/321907336652528.php
•   Bruce Miller, the longest-living dialysis patient in Texas, has been on dialysis for 30 years. (Oct. 2002) http://www.news8austin.com/content/headlines/?ArID=50178&SecID=2
•   Ruth Reynolds, a 53-year old dialysis patient, has been undergoing dialysis for 32 years. (Feb. 2007) http://jimmorris.wordpress.com/2007/02/page/2/
•   Lynnette Zimmerman is the longest-surviving dialysis patient in Billings. Twenty-five years is not totally uncommon but a bit unusual. (Jan. 2003) http://www.billingsgazette.com/newdex.php?display=rednews/2003/01/08/build/health/20-dialysis.inc

And then there's our very own Zach!  :bandance;

Title: Re: What is the longest a patient has survived on dialysis?
Post by: kitkatz on August 29, 2008, 05:16:25 PM
I will be at ten years November 2, 2008.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: flip on August 29, 2008, 05:46:09 PM
There's a lady from Australia who posts on Davita sometimes who has been on 39 years.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Zach on August 29, 2008, 05:52:26 PM

And then there's our very own Zach!  :bandance;


Thank you okarol!
 :-*
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Adam_W on August 29, 2008, 06:24:01 PM
I heard a rumour of a lady that survived 60 years on dialysis. I seriously doubt it was true, though. If it was, then she would have been one of the first dialysis patients ever.

Adam
Title: Re: What is the longest a patient has survived on dialysis?
Post by: circleNthedrain on August 30, 2008, 12:26:23 AM
I started hemo in Sept. '79, had two transplants, but now I'm back on hemo. 
Title: Re: What is the longest a patient has survived on dialysis?
Post by: del on August 30, 2008, 09:49:02 AM
Sometime this month (August 2008) marked hubby's 11th year on dialysis!! And he's hoping for many more!!!!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kevno on August 31, 2008, 02:02:12 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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kitkatz on August 31, 2008, 07:49:50 PM
Why thank you Kevno, I had no idea I was OLD!  :Kit n Stik; :Kit n Stik; :Kit n Stik;




Seriously, a lot of people tell you they have been on dialysis twenty years, when they had a transplant for anywhere from 5 to 15 of those years.  Those transplant years do not count as years on dialysis, people!   Yes, it is a treatment, but it is not dialysis.  I always look at years with a rather jaundiced eye.


Zach you are my hero!


Title: Re: What is the longest a patient has survived on dialysis?
Post by: Zach on August 31, 2008, 08:26:01 PM

Zach you are my hero!


 :-*

Title: Re: What is the longest a patient has survived on dialysis?
Post by: kevno on September 01, 2008, 08:13:33 AM
Never worked it out like that just the years been on dialysis. which is a total of 25 years. Going on 26 years now. If counting transplant years I have been on dialysis for 31years nearly 32years. Which a transplant is just another kind of treatment according to epoman.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on September 17, 2008, 03:23:05 PM

* Ken Sharp celebrated surviving 32 years on dialysis yesterday. Sharp, 52, has been on dialysis since Sept. 6, 1976 - http://ihatedialysis.com/forum/index.php?topic=10013.0
* Jill Schofield marks 25 years on dialysis. Jill, 57, began dialysis in 1982. http://ihatedialysis.com/forum/index.php?topic=6415.0
* Robert Bryden began PD in 1976, at 19 years of age. http://ihatedialysis.com/forum/index.php?topic=2106.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: petey on September 17, 2008, 06:04:26 PM
My Marvin has been battling ESRD since March of 1995; however, he hasn't been "on" dialysis that entire time.  He had a three-year-and-three-month reprieve when he had a transplant (July 2000 - October 2003).  If you add up just his time on dialysis (5 years and 6 months the first time and now 4 years and 11 months this last time), he's at 10 years and 5 months currently.  If he doesn't get another transplant (and he's back on that list again!!!), he said he wants to be THE longest surviving dialysis patient.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on November 29, 2008, 02:00:34 PM

Alex DiPasquale, a former assistant Monroe County executive, was the subject of the Aug. 9 column. He's been on dialysis for 31 years, and over time, his health has suffered. He's now blind and dealing with other health issues.
Three months ago, Alex described himself as the "happiest man in the world." He still is, I'm pleased to report.
"I am blessed because of the love of my family, my friends and my God," he wrote me this week. "I am so thankful for the joy and happiness they bring to my life each and every day."
(Nov. 2008) http://www.democratandchronicle.com/article/20081129/NEWS0202/811290343/1002/NEWS
Title: Re: What is the longest a patient has survived on dialysis?
Post by: nursewratchet on November 30, 2008, 04:44:53 PM
I have 2 long time patients on Hemo.  One has been on for 29 years, and the other for 31.  They are both in pretty decent general health, both working.  Both have fistulas. The 29 year patient is on her 1 and only fistula.  These 2 patients have taught me more thanI ever knew about dialysis... As far as oldest, we have man in the clinic who is 93!!!  He gets a ride, but he walks in and out by himself, never a walker or a wheelchair...Also has a fistula.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: bette1 on December 02, 2008, 07:58:42 AM
I started dialysis November of 1988, I had a 12 year break when I had a transplant, and I have been on dialysis again since 2006.  It's been over 20 years.  Most times it doesn't seem that long, but then there are days...
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on February 17, 2009, 10:08:52 AM
Ken Sharp, a 52-year-old Peterborough man, has survived dialysis for nearly 33 years. http://ihatedialysis.com/forum/index.php?topic=12505.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: lola on February 17, 2009, 10:14:42 AM
I need to have Otto reads this, as we are both thinking that with a pra of 100% and them saying he can't do IVIG and Plasmapherisous(sp?) we are trying to adjust to Dialysis for life. As long as he can keep :sluff; and working he's ok with it
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kitkatz on February 17, 2009, 04:05:14 PM
Baby, I am stuck there too, dialysis for the rest of my life. *Sigh* But I am along for the ride!  :kickstart;
Title: Re: What is the longest a patient has survived on dialysis?
Post by: monrein on February 17, 2009, 04:23:58 PM

Ken Sharp, a 52-year-old Peterborough man, has survived dialysis for nearly 33 years. http://ihatedialysis.com/forum/index.php?topic=12505.0

Peterborough is a beautiful medium sized town on the way to our cottage.  Lots of lakes to enjoy and my husband sometimes goes to lacrosse matches there. 
Title: Re: What is the longest a patient has survived on dialysis?
Post by: swramsay on February 21, 2009, 07:31:53 PM
Whenever that question is asked "How long do people survive on dialysis?" my mind automatically goes to "How long do people survive on dialysis before dialysis eventually kills them?"

To clarify in my mind, do most people die BECAUSE of dialysis related issues? Or do they eventually die of something else and still happen to be on dialysis?

I hope I can live a normal life with this treatment. I can understand some physical changes here and there because of dialysis but I hope it doesn't mean they are necessarily life-threatening changes.

??????? ???
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kitkatz on February 22, 2009, 10:20:46 AM
Most doctors will tell you dialysis patients are in a race against heart problems, before anything else.  That is why most of us are taking aspirin and some sort of cholesterol pill, plus BP meds.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Zach on February 22, 2009, 11:52:07 AM

To clarify in my mind, do most people die BECAUSE of dialysis related issues? Or do they eventually die of something else and still happen to be on dialysis?


It may depend on how healthy a lifestyle you led before CKD.

8)
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on March 14, 2009, 01:12:07 PM

Lyria Ramos celebrates 30 years on dialysis http://ihatedialysis.com/forum/index.php?topic=12888.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on March 22, 2009, 12:09:59 PM

* Ken Sharp celebrated surviving 32 years on dialysis yesterday. Sharp, 52, has been on dialysis since Sept. 6, 1976 - http://ihatedialysis.com/forum/index.php?topic=10013.0


Update - http://ihatedialysis.com/forum/index.php?topic=13005.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Bill Peckham on March 22, 2009, 07:28:40 PM
Karol - it would be easier to track if you updated the first post as you identify additional names. Here are some new ones
http://medgenmed.medscape.com/viewarticle/580265_print (http://medgenmed.medscape.com/viewarticle/580265_print)
there is the case study and then a little table with several names

Jim Albers was one Scribner's first patients and made it into his 35th or 36th year.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on March 22, 2009, 07:43:12 PM
Karol - it would be easier to track if you updated the first post as you identify additional names. Here are some new ones
http://medgenmed.medscape.com/viewarticle/580265_print (http://medgenmed.medscape.com/viewarticle/580265_print)
there is the case study and then a little table with several names

Jim Albers was one Scribner's first patients and made it into his 35th or 36th year.

Thanks, maybe I'll cut and paste sometime when I have a chance.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on March 23, 2009, 09:40:22 AM
Frank Kikkert will mark his 30th anniversary on dialysis on April 7, 2009 http://ihatedialysis.com/forum/index.php?topic=13024.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Bajanne on March 26, 2009, 11:57:46 AM
I cannot believe that this is the first time that I have seen this thread!!!!!  I am totally ashamed!   Especially since a countryman of mine was mentioned in it.
Vern Best - known as El Verno del Congo was the first person I had ever heard about on dialysis.  He only passed last year.  He was a cultural icon in my country, Barbados - a singer and drummer.
I love to hear these stories of people living long on dialysis.  they encourage me.
My brother died of cardiac arrest after 10 years on dialysis.

We have to look after our hearts, people!!!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: lanemn9 on March 31, 2009, 10:28:28 AM
Hi I have been on dialysis 5 yrs now and 5 yrs seems like a life time not looking forward to 25 more but then who would be
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Zach on March 31, 2009, 11:25:19 AM
Time flies when you're having fun!


8)
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on April 29, 2009, 11:47:28 PM

Genell Drake has been receiving dialysis treatments for renal failure for several hours per day, three days a week for 32 years. [April 2009] http://ihatedialysis.com/forum/index.php?topic=13671.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on May 17, 2009, 09:05:21 PM
Thirty years of dialysis for 'miracle' woman Theresa Spinner [May 2009] http://ihatedialysis.com/forum/index.php?topic=13959.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Jean on May 17, 2009, 11:35:30 PM
That is so amazing!!!! I asked my neph the same question, and he said, " I want you to think of dialysis as a life preserving help". But I did later read that 50% of the people who die on dialysis die of heart problems, not the dialysis.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: maritza0486 on August 11, 2009, 03:17:52 PM
I know a lady at my shift in dialysis and she says she has been on dialysis for 36 years. I was amazed to have met her. She is wonderful and so very friendly. She told me that she did receive a kidney transplant years ago but it only lasted her a few months because she has a condition that caused for the kidney to reject even with her medications. She said it was the best few months. I feel really bad that her condition is a problem to receive a kidney transplant. I pray for her and hope she is ok because she is such a sweet lady.

So I wanted to know how long everyone has been on dialysis...I have been on dialysis for 3 months already. It hasn't been so bad. :waving;
Title: Re: What is the longest a patient has survived on dialysis?
Post by: iketchum on August 11, 2009, 03:21:25 PM
we have several guys at the unit who have been doing it over 20 years
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Bill Peckham on August 11, 2009, 03:41:36 PM
On this podcast  Across the Country - Dialysis Style with Harvey Wells - http://www.rsnhope.info/programs/kidneytalkshows/Harvey_Wells/Harvey_Wells_0809.php (http://www.rsnhope.info/programs/kidneytalkshows/Harvey_Wells/Harvey_Wells_0809.php)
Harvey mentions meeting someone who has been on dialsyis for 40 years.

It's a good program - about 25 minutes long. You can listen online or download it through iTunes for free. All the KidneyTalk shows are free. There are over 100 now.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: napala turki on August 12, 2009, 07:10:33 AM
I'm now 51, how long can I live? aiya..... what to do, life must goes on maa...... just pretending nothing happens lorr..., however I'm very glade, I'm still having a family, job, friends and the most wonderful moment is love from God... keep me alife. :bow; :bandance;
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on September 10, 2009, 11:10:09 PM

* Ken Sharp celebrated surviving 32 years on dialysis yesterday. Sharp, 52, has been on dialysis since Sept. 6, 1976 - http://ihatedialysis.com/forum/index.php?topic=10013.0


Update - http://ihatedialysis.com/forum/index.php?topic=13005.0

Update! Ken Sharp - On Dialysis for 33 Years! http://ihatedialysis.com/forum/index.php?topic=15680.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: LightLizard on September 11, 2009, 11:58:18 AM
http://www.youtube.com/watch?v=BNN8sGZQd5w

43 years on dialysis. a guiness book record holder, by the way...
;)
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on September 12, 2009, 10:26:19 AM
http://www.youtube.com/watch?v=BNN8sGZQd5w

43 years on dialysis. a guiness book record holder, by the way...
;)
'
Thanks for giving us that info, more here http://www.kidney.org.uk/books/tocher.html
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on September 22, 2009, 01:29:05 PM
Lori Van Antwerp considers her 35 years on kidney dialysis a bittersweet milestone. Van Antwerp was 15 when she started dialysis in May 1972. [Sept.2009] http://ihatedialysis.com/forum/index.php?topic=15856.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Zach on September 22, 2009, 08:57:19 PM
 :clap;
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on September 26, 2009, 08:54:41 AM
30 Years on Dialysis -- 'Living is what matters' says Bernice Joseph, age 66, after 30 years of dialysis and 2 short-term failed transplants. [Sept. 2009] http://ihatedialysis.com/forum/index.php?topic=15900.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Lillupie on October 21, 2009, 12:08:36 PM
THere is a guy who wrote an article and i also got the pleasure of him filling out my book's questionaire, Rick Faber who has been on kidney dialysis since 1968.

Lisa
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on October 21, 2009, 12:30:56 PM
THere is a guy who wrote an article and i also got the pleasure of him filling out my book's questionaire, Rick Faber who has been on kidney dialysis since 1968.

Lisa

http://ihatedialysis.com/forum/index.php?topic=10695.0 Yeah - he's here!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Tommy on October 26, 2009, 02:48:31 PM
Hallo, my Name is Thomas Lehn and I come from Ingelheim in the near of Frankfurt/Germany. I'm at dialysis since 1970. I was 14 years old when I come at dialysis. Now, I am Working the whole day (EDV Programmer)and since 1983 I make homedialysis with my wife in the evening or night for 5 until 7 hours three times in the week. My hobbies there are driving with my cabrio and I'm in leader by a dialysis association in Germany. Look my website (www.thomas-lehn.de)
Many greetings for you, Thomas Lehn
You can write me: Thomas.Lehn@onlinehome.de
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Lillupie on October 30, 2009, 09:22:00 PM
I have a question. Why arent these people getting transplants?


Lisa
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on October 31, 2009, 12:31:44 AM
Some people do not qualify for a transplant and other choose to stay on dialysis rather than get a transplant.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on January 12, 2010, 08:21:12 AM
Roy Bowen has been on dialysis the past 23 years [Jan 2010] http://ihatedialysis.com/forum/index.php?topic=17374.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: dwcrawford on January 12, 2010, 10:23:37 AM
Not all that good with math and my  excel is not on this computer, but I know of one special dude on dialysis about  25 years (and still kicking).  Oops, he just kicked me.   :beer1;

Rather bear those ills we have than go to those we know not of.... lil
Title: Re: What is the longest a patient has survived on dialysis?
Post by: fc2821 on January 12, 2010, 10:45:42 AM
Hallo, my Name is Thomas Lehn and I come from Ingelheim in the near of Frankfurt/Germany. I'm at dialysis since 1970. I was 14 years old when I come at dialysis. Now, I am Working the whole day (EDV Programmer)and since 1983 I make homedialysis with my wife in the evening or night for 5 until 7 hours three times in the week. My hobbies there are driving with my cabrio and I'm in leader by a dialysis association in Germany. Look my website (www.thomas-lehn.de)
Many greetings for you, Thomas Lehn
You can write me: Thomas.Lehn@onlinehome.de

 :welcomesign; Thomas. There a special sections for introductions you might wish to use also. Glad you found us.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: cassandra on January 15, 2010, 01:26:45 PM
The longest dialysing woman in Holland is doing it for 43 years now. St Lucashospital in Amsterdam. I think I read that she doesn't want a transplant anymore now.....
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Bub on February 15, 2010, 10:04:16 AM
43 years?  I would love to blow by that record!!!!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on February 15, 2010, 10:17:01 AM
Hallo, my Name is Thomas Lehn and I come from Ingelheim in the near of Frankfurt/Germany. I'm at dialysis since 1970. I was 14 years old when I come at dialysis. Now, I am Working the whole day (EDV Programmer)and since 1983 I make homedialysis with my wife in the evening or night for 5 until 7 hours three times in the week. My hobbies there are driving with my cabrio and I'm in leader by a dialysis association in Germany. Look my website (www.thomas-lehn.de)
Many greetings for you, Thomas Lehn
You can write me: Thomas.Lehn@onlinehome.de

 :welcomesign; Thomas. There a special sections for introductions you might wish to use also. Glad you found us.

I looked at Thomas's page on the babelfish translator (German to English) and you can see that here http://66.163.168.225/babelfish/translate_url_content?.intl=us&lp=de_en&trurl=http%3A%2F%2Fwww.thomas-lehn.de%2F He's celebrating 40 years!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Zach on February 15, 2010, 10:19:01 AM

43 years?  I would love to blow by that record!!!!


Bub, sounds like a good record to break!
 :beer1;

8)
Title: Re: What is the longest a patient has survived on dialysis?
Post by: phyl1215 on February 15, 2010, 04:40:22 PM
This is encouraging as I just started doing PD 3 wks. ago.  On the transplant list but high antibodies so probably no transpant either.  I'm 65 so hoping for a good 10 yrs on PD. 
Title: Re: What is the longest a patient has survived on dialysis?
Post by: fc2821 on February 16, 2010, 11:32:20 AM
This is encouraging as I just started doing PD 3 wks. ago.  On the transplant list but high antibodies so probably no transpant either.  I'm 65 so hoping for a good 10 yrs on PD.

    Hope you do more.  That sounds bad doesn't.  I hope ypu get the transplant and don't have to do more.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on March 30, 2010, 01:09:37 PM
Gus Castaneda has been on dialysis since 1978 - over 32 years [Mar. 2010]
http://ihatedialysis.com/forum/index.php?topic=18394.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on May 19, 2010, 10:32:09 PM
This guy falls into BOTH categories! Long living dialysis patient AND transplant patient!
Beginning at age 22, Dr. Robin Eady underwent dialysis treatment for 24 years, and he has lived with a kidney transplant for 23 years. [May 2010] http://ihatedialysis.com/forum/index.php?topic=18959.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on June 01, 2010, 03:30:02 PM
 :waving; Our own Kevno has been on dialysis 22 years [2010] after 6 years with a transplant and 5 years of dialysis before that! http://ihatedialysis.com/forum/index.php?topic=19101.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on July 21, 2010, 01:07:38 AM
Dialysis patient's 20-year anniversary a rare event.
Debra Reynolds, now 50, hit her 20-year mark a few weeks ago.
[July 2010]
http://ihatedialysis.com/forum/index.php?topic=19579.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: carson on July 21, 2010, 10:49:03 AM
wow, I'm just a newbie....will be 13 yrs in August. Seems like forever, but, I still have 40 more years to go!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on July 31, 2010, 07:49:59 PM
A man who spent almost three decades on dialysis after suffering kidney failure is "ecstatic" after getting his long-awaited kidney transplant. [July 2010] http://ihatedialysis.com/forum/index.php?topic=19699.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on November 26, 2010, 12:50:53 PM
More than half of David Davis’s life has been spent on dialysis, and he's still active after 29 years of treatment.  http://ihatedialysis.com/forum/index.php?topic=21086.0 [Nov. 2010]
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on December 08, 2010, 11:39:22 PM
Ocala native Barbara Rivers celebrates surviving with dialysis: 28 years! http://ihatedialysis.com/forum/index.php?topic=21209.0 [Dec 2010]
Title: Re: What is the longest a patient has survived on dialysis?
Post by: PVUgrad on December 09, 2010, 05:15:55 AM
Reading this gives me hope, as hubby starts in center D today.
He has been denied a transplant due to other health factors. :(
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kitkatz on December 21, 2010, 08:00:10 PM
Your hubby can come on over and sit in my corner.  No transplant, not eligible, and on dialysis for twelve years.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: PVUgrad on December 27, 2010, 04:06:05 PM
Awwww...thanks Kit!

I just hope he holds out a year on this. He is not in a "good place" mentally now that he had to give in and start.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Riki on December 28, 2010, 07:39:20 AM
I know a guy who's been on dialysis for most of his life.  They knew before he was born that he would have kidney issues.  He was on PD for the first year or so, but it didn't work for him, so then they put him on hemo.  He was still only a baby.  Someone actually had to sit in the chair and hold him during treatment.  I think he's about 30 now.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on February 24, 2011, 03:33:07 PM
Denny Burgess celebrates 25 years on dialysis [Feb 2011] http://ihatedialysis.com/forum/index.php?topic=22109.0
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Riki on March 11, 2011, 11:22:15 PM
I know a guy who's been on dialysis for most of his life.  They knew before he was born that he would have kidney issues.  He was on PD for the first year or so, but it didn't work for him, so then they put him on hemo.  He was still only a baby.  Someone actually had to sit in the chair and hold him during treatment.  I think he's about 30 now.

I found this fella on Facebook recently.  I told him about this site, but I don't know if he's been here or not
Title: Re: What is the longest a patient has survived on dialysis?
Post by: JerseyGirl1965 on June 16, 2011, 06:54:57 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!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: PatDowns on June 16, 2011, 08:35:59 AM
Hi JerseyGirl - thank you for taking the time to come on here and giving us the update on your Dad.  He truly is an inspiration as well as you and the family.  Renal failure does impact the entire family and yours is testament that it can be successfully integrated into day to day life.  Please mention this message board to your Dad.  I'd appreciate hearing firsthand of his experiences!  Best wishes - Pat

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!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: PatDowns on June 16, 2011, 08:48:00 AM
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



 
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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:
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Bill Peckham 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 (http://renux.dmed.ed.ac.uk/edren/Patientaccounts/Eady.html)
and here http://ihatedialysis.com/forum/index.php?topic=18959.msg327467#msg327467 (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 (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 (http://www.aakp.org/aakp-library/Peter-Lundin/index.cfm)



 
Title: Re: What is the longest a patient has survived on dialysis?
Post by: JerseyGirl1965 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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Bill Peckham 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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: ToddB0130 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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: JerseyGirl1965 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 :)
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Meinuk 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...
Title: Re: What is the longest a patient has survived on dialysis?
Post by: JerseyGirl1965 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 :)
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kitkatz on November 22, 2011, 05:14:47 PM
Good for your Dad Jerseygirl.  I am sorry he passed on. Love to your family.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: willowtreewren on November 22, 2011, 06:53:44 PM
 :grouphug; :grouphug; :grouphug;

What an inspiration!

Jerseygirl, I'm sorry for your loss.

Aleta
Title: Re: What is the longest a patient has survived on dialysis?
Post by: JerseyGirl1965 on November 27, 2011, 10:48:40 AM
Thank you everyone!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: noahvale on May 25, 2013, 06:12:42 AM
*
Title: Re: What is the longest a patient has survived on dialysis?
Post by: karamiel 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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: doberose 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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: babycake 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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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]
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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

Title: Re: What is the longest a patient has survived on dialysis?
Post by: babycake 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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: happyonhemo 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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol 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;
Title: Re: What is the longest a patient has survived on dialysis?
Post by: babycake 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)



http://www.umc.edu/News_and_Publications/Centerview/2012-10-22-02_40%C2%A0years%C2%A0of%C2%A0home%C2%A0dialysis%C2%A0makes%C2%A0Forest%C2%A0woman%C2%A0%E2%80%98one%C2%A0of%C2%A0the%C2%A0longest%C2%A0surviving%C2%A0patients%C2%A0in%C2%A0the%C2%A0world%E2%80%99.aspx
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kristina on October 26, 2013, 02:00:54 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!

... 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.


Title: Re: What is the longest a patient has survived on dialysis?
Post by: noahvale on October 26, 2013, 09:14:33 AM

... 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



Title: Re: What is the longest a patient has survived on dialysis?
Post by: obsidianom on October 26, 2013, 01:09:11 PM

... 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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kristina on October 26, 2013, 02:00:16 PM
Thank you noahvale and obsidianom for the information,

it is very much appreciated.

Kind regards from Kristina.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Bill Peckham on October 26, 2013, 03:51:18 PM
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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kristina on October 27, 2013, 02:09:32 AM
Thank you Bill Peckham for your thoughts
about longevity whilst on dialysis.

Kind regards from Kristina.
 
Title: Re: What is the longest a patient has survived on dialysis?
Post by: babycake on December 20, 2013, 05:45:57 PM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on December 23, 2013, 01:00:13 AM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on June 18, 2014, 12:40:15 AM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: babycake on July 15, 2014, 11:48:30 AM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on February 26, 2015, 12:13:38 PM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on March 02, 2015, 09:18:27 PM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Riki on March 02, 2015, 10:22:13 PM
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..
Title: Re: What is the longest a patient has survived on dialysis?
Post by: Rob Brydon on October 08, 2015, 06:28:54 PM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: PrimeTimer on October 09, 2015, 12:31:14 AM
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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: kitkatz on October 18, 2015, 12:52:47 PM
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.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: PrimeTimer on October 25, 2015, 06:14:17 PM
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!
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on February 02, 2023, 11:44:43 AM
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
Title: Re: What is the longest a patient has survived on dialysis?
Post by: iolaire on February 06, 2023, 05:21:50 AM
That was a good run.  Thanks for sharing this and the other stories.
Title: Re: What is the longest a patient has survived on dialysis?
Post by: okarol on February 12, 2023, 12:46:14 PM
That was a good run.  Thanks for sharing this and the other stories.
:2thumbsup;