I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: CW on July 23, 2008, 09:53:07 PM
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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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Approaching 15 years.
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since 2001
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about 13 years ago
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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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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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Started dialysis 8/14/06 ...Boxman
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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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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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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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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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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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2 years 2 months
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Diagnosed with PKD in 1998...cancer diagnoses in December 2006...down the slippery slope ever since
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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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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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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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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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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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I was diagnosed in 1987 at the age of 21 with pkd.
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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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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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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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7 precarious years.
Still pre-dialysis.
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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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Thanks for the response everyone hearing all your stories e is encouraging. I can sincerely say that I hope we all live to a ripe old age, have the pleasure of seeing our loved ones succeed in life and have some fun along the way. May the God of your choice bless you all!
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I ignored a doctor's concern about the state of my kidneys in June 2004. It was a doctor here in the BVI and I was about to go to Barbados for my summer vacation. I told him I would check with my doctor in Barbados. But once there..... (and I was not feeling ill in any way) you know.
Then I had some really bad feeling the next year. I found I would be puffing and panting after only about three steps up the stairs at school. then one afternoon in Sept, it was so bad, my daughter took me to the hospital. I was admitted suffering from congestive heart failure and fluid in my lungs. they fixed that but announced that I only had 15% renal function.
So, I started dialysis in September 2005, but thankfully, I found IHD just before I started!!!
THREE YEARS THIS SEPTEMBER!!
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I was diagnosed in 1993, so that's 15 years ago give or take.. though they believe I first "got" CKD when I was an infant, so let's say around the age of 2... so that's 36 years.....
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hey my name is Brenda. I am new 2 this site. i was n kidney failure 5 years before being diagnosed with ESRD. I have been on dialysis since november 2007. only about 8 months.