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Author Topic: How long have you lived with CKD?  (Read 9906 times)
CW
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Yeah .............That's me!

« on: July 23, 2008, 09:53:07 PM »

I was thinking... I always have assumed I would not live to be very old due to kidney disease. I have seen that this is not always true

How long have you been living with kidney disease?
10 years 5 moths 25 days with ESRD

I do think I was sick for several months before that but was never diagnosed
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*Common Sense is an uncommon thing


20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
st789
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« Reply #1 on: July 23, 2008, 09:57:16 PM »

Approaching 15 years.
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flip
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« Reply #2 on: July 23, 2008, 10:14:27 PM »

since 2001
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That which does not kill me only makes me stronger - Neitzsche
Ang
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« Reply #3 on: July 24, 2008, 12:08:58 AM »

about  13 years  ago
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live  life  to  the  full  and you won't  die  wondering
monrein
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Might as well smile

« Reply #4 on: July 24, 2008, 05:48:54 AM »

Original problem since 8 months old.  High blood pressure since about age 10.  Warned about renal failure at 18.  Full renal failure and dialysis at 26.  I'm 54 now so if we start at the point of dialysis, that's 28 years so far and I'm not planning to pack it in any time soon.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
kitkatz
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« Reply #5 on: July 24, 2008, 06:30:35 AM »

Original kidney/bladder problems begin at 2 years old with reflux.   The dialysis part and kidney failure began 9 and a half years ago in November of 1998.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
boxman55
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« Reply #6 on: July 24, 2008, 03:26:22 PM »

Started dialysis 8/14/06 ...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
petey
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« Reply #7 on: July 24, 2008, 03:55:58 PM »

Marvin's been living with ESRD for 13 years and 4 months.  He started on dialysis the first time on March 30, 1995 (for 5 1/2 years).  He got a transplant on July 26, 2000.  He went back on dialysis on October 21, 2003.
If he doesn't get another transplant (and he's on "the" list), his goal is to be the longest surviving dialysis patient.  He's 52 now.
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MIbarra
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Stopping to smell the bluebonnets

« Reply #8 on: July 24, 2008, 04:00:05 PM »

Problems with reflux around 4 years which caused kidney disease. I'm 33 now and have no intentions of leaving anytime soon. As I kid my husband, I want to make his life miserable for as long as I can.  =)   joking of course
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Cadaver transplant April 29, 2007
flip
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« Reply #9 on: July 24, 2008, 04:15:05 PM »

There used to be a lady from Australia who posted on the Davita site (maybe here too) who had been on dialysis for over 38 years. That has got to be a record.
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That which does not kill me only makes me stronger - Neitzsche
pelagia
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« Reply #10 on: July 24, 2008, 04:46:27 PM »

My husband's kidney function declined steadily from PKD.  Doc said he would likely need a transplant or dialysis in 2004, but he held out until 2008. He wasn't exactly healthy for those last few years, but he could still pee (and y'all know how that is...).  He was on dialysis for only 7 weeks.
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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« Reply #11 on: July 24, 2008, 04:48:35 PM »

There used to be a lady from Australia who posted on the Davita site (maybe here too) who had been on dialysis for over 38 years. That has got to be a record.

Marvin will have to go another 25 years to beat that!  Damn!  I hope he gets his second transplant soon!
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Sluff
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« Reply #12 on: July 24, 2008, 06:25:41 PM »

2 years 2 months
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KR Cincy
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Home hemodialysis since May 07

« Reply #13 on: July 25, 2008, 06:47:07 AM »

Diagnosed with PKD in 1998...cancer diagnoses in December 2006...down the slippery slope ever since
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Not giving up...thanks to Susan.
Deanne
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« Reply #14 on: July 25, 2008, 06:55:24 PM »

I'm still pre-ESRD at 25% function. i was initially diagnosed with kidney disease when I was 9, so 36 years.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Adam_W
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Me with Baron von Fresenius

« Reply #15 on: July 25, 2008, 07:11:48 PM »

I've known about my ESRD for about a year and a half, but since it hit so suddenly because I didn't know anything was wrong, I could possibly have had CKD a good 15 to 20 years and never knew it.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
angela515
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i am awesome.

« Reply #16 on: July 25, 2008, 07:37:56 PM »

I was DX'd with Lupus at age 12 and it hit me violently and furiously fast and attacked my organs first thing and started my ESRD at age 13, so... 17 years.
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
twirl
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« Reply #17 on: July 25, 2008, 07:42:44 PM »

oh angela515     you were so young and still are

since birth but unknown for a while----- ignorance was bliss---------- mainly for 12 years when I knew it was horrible

Sluff - you are a baby to this
Mibarra- every good wife lives to make her husband's life as miserable as possible :bandance; that is our job :waving;
               and now you have all the time you need on your long, long trip ;D
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Chris
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WWW
« Reply #18 on: July 25, 2008, 07:58:21 PM »

I don't know when it started, I barely saw a doctor unless I needed insulin refills. I worked 16 hours a day and didn't make time for a doctor. Then the company I worked for laid off a few of us and then I got sick real bad. It felt like the worst flu I ever had. Whatever I drank I would  :puke; I didn't eat very much, but slowly started to feel better. At this time I moved back with my parents, collecting unemployment, going to dislocated workers and started to get involved with going back to college. Then I started to have hypoglycemic attacks more often and one was real bad. I awoke while having an attack and was very disorientated. I couldn't comprehend what I was seeing nor could I get up, I had to crawl trying to find food. Somehow I managed to call my mother at work, who then called 911. Somehow I managed to open the door to let the police officer in. In the back of my mind I knew my dad would be pissed if the door was broken. In the ER after I was coherent, I was told I had renal failure with only 8% function left and I could not go home. So a few days later I had my first dialysis that just took the living crap out of me and hated it ever since.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
cookie2008
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« Reply #19 on: July 26, 2008, 09:01:12 PM »

I was diagnosed in 1987 at the age of 21 with pkd.
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
KT0930
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« Reply #20 on: July 30, 2008, 01:15:45 PM »

Got an e.coli infection at age 8 or 9 months; started seeing nephs around age 4 or 5; started PD age 6; first transplant age 7. Counting since the beginning of dialysis, 28.5 years and 3 transplants. No plans of leaving anytime in the next four or five decades.  :2thumbsup;
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
peleroja
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I have 16 hats, all the same style!

« Reply #21 on: July 30, 2008, 01:25:12 PM »

I was diagnosed with glomerulonephritis  with a creatinine count of 19 when I was about 35 or so.  Due to either an incompetent neph or complete misunderstanding on my part over the next few months, my creatinine count came down to "normal" and I honestly thought he said I was cured.  From that point to 5 years ago, I never took care of myself, never watched my food (did cut back on the salt though), never saw a doctor, much less a neph.  Since I am now 65, I guess I've had it around 30 years (probably a lot longer than that considering I never took care of my high blood pressure which is what caused the decline in the first place).  You can live a pretty long time as your kidneys gradually decline before they completely give up the ghost!
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Trikkechickk
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« Reply #22 on: July 30, 2008, 02:35:02 PM »

Was diagnosed w/CKD back in 1983.  My creatinine remained stable at 1.5 - 1.9 for 25 years.  Then when 2008 came, my little dears failed on me, which was reveiled to me in March.  On big D since june 7, 2008.  But still going strong.
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Sunny
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Sunny

« Reply #23 on: July 30, 2008, 09:15:05 PM »

7 precarious years.
Still pre-dialysis.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
keith
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« Reply #24 on: July 30, 2008, 09:22:07 PM »

As we all know men are hard headed and stubborn i was in pain for almost three yrs before i went to a Dr. i was on dialysis for 7+ yrs so I'll say @ least 8 yrs
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Life ain't Life wit out Me!!! U Heard Me  
Transplanted on 12-6-2007 on dialysis7+yrs
Started Dover dialysis support group. A group for patients, familyand friends.
NOW RUN-Tel-Dat
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