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Author Topic: Life expectancy on dialysis.  (Read 63471 times)
MattyBoy100
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What's dialysis?

« on: August 24, 2006, 10:21:57 AM »

I made the innocent remark yesterday evening to one of the nurses in my unit asking how long I had left to dialyze.  Do you know what he replied?  He meant it as a joke and said "about 15 years!".

Now, I know this was a joke and he would`ve been offended if I took it the wrong way.  But the problem is, it got me thinking about how long I really do have left with or without a transplant, I`m not even on the list at the moment.  How long can you last on dialysis for??? I know everyone is different but what`s the longest time anyone has been on dialysis???  I don`t want to be morbid but I also know that most people in the end, pass away from some other illness related to kidney failure, not the kidney failure itself.  I`m only 34 and the thought of possibly living until I`m only 50 has me slightly anxious and worried!  I think it was a stupid comment to make anyway cos I got enough on my plate without having to worry about long I may or may not live for!!!
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mallory
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« Reply #1 on: August 24, 2006, 10:43:26 AM »

That's exactly the kind of comment someone made to me and scared me to death!  I will tell you this, I know a woman who has been on dialysis for 34 years (she chose not to have a transplant) and she's doing just great.  So, it is possible to live a long and very fulfilling life on dialysis, don't worry.
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Sometimes the light’s all shinin’ on me;
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Lately it occurs to me what a long, strange trip it’s been.
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Zach
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« Reply #2 on: August 24, 2006, 10:49:38 AM »

I'm still here!     ;)
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In-center uninterrupted hemodialysis since 1982--32 YEARS on March 3, 2014 !!
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No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06    ;)
Work full time.  I make films.

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« Reply #3 on: August 24, 2006, 11:40:40 AM »

I made the innocent remark yesterday evening to one of the nurses in my unit asking how long I had left to dialyze.  Do you know what he replied?  He meant it as a joke and said "about 15 years!".

Now, I know this was a joke and he would`ve been offended if I took it the wrong way.  But the problem is, it got me thinking about how long I really do have left with or without a transplant, I`m not even on the list at the moment.  How long can you last on dialysis for??? I know everyone is different but what`s the longest time anyone has been on dialysis???  I don`t want to be morbid but I also know that most people in the end, pass away from some other illness related to kidney failure, not the kidney failure itself.  I`m only 34 and the thought of possibly living until I`m only 50 has me slightly anxious and worried!  I think it was a stupid comment to make anyway cos I got enough on my plate without having to worry about long I may or may not live for!!!

You know what don't worry, when it's your time, it's your time. You can live a long time on dialysis. It was very unprofessional of the nurse to make a comment like that even in jest. I am 34 and have been on dialysis since 21 with NO transplant and member "Zach" has been on like 24 years, no transplant. Hell we NEVER know when we are going to die, you may die in a car accident totally unrelated to your health. So do me a favor in the future ask your questions here on this site, I have found many nurses and techs are just their for a paycheck and don't really give a crap about you. Granted there are some wonderful techs and nurses out there who really do care and want to make a difference.

- Epoman
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stauffenberg
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« Reply #4 on: August 24, 2006, 02:13:54 PM »

There are anecdotes about extraordinary extremes in all areas of life, from the length of people's lives to how many hot dogs they can eat in 10 minutes, but the only sensible statistics to concentrate on if you want to assess what your likely prospects are are the average values for typical people.

Professor G. M. Danovitch in his book, "Handbook of Kidney Transplantation" (2001) gives on page 15 the average life expectancies of dialysis patients:

For patients ranging in age from 20 to 39, non-diabetic: 20 years; diabetic: 8 years

For patients ranging in age from 40 to 59, non-diabetic: 13 years; diabetic: 8 years

For patients ranging in age from 60 to 74, non-diabetic: 7 years; diabetic: 5 years.

These limited life expectancies are largely due to the fact that dialysis only replaces 10% of normal renal function, so patients remain in a permanently toxic state.  Toxic chemicals leached from dialysis tubing, infection from the treatment process, hypotensive crises, etc., also contribute to the shortened life expectancy.  Life expectancy is much improved by transplant, with non-diabetics gaining an extra 50% average lifespan, and diabetics under 60 more than doubling their life expectancy.   
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« Reply #5 on: August 24, 2006, 02:38:33 PM »

There are anecdotes about extraordinary extremes in all areas of life, from the length of people's lives to how many hot dogs they can eat in 10 minutes, but the only sensible statistics to concentrate on if you want to assess what your likely prospects are are the average values for typical people.

Professor G. M. Danovitch in his book, "Handbook of Kidney Transplantation" (2001) gives on page 15 the average life expectancies of dialysis patients:

For patients ranging in age from 20 to 39, non-diabetic: 20 years; diabetic: 8 years

For patients ranging in age from 40 to 59, non-diabetic: 13 years; diabetic: 8 years

For patients ranging in age from 60 to 74, non-diabetic: 7 years; diabetic: 5 years.

These limited life expectancies are largely due to the fact that dialysis only replaces 10% of normal renal function, so patients remain in a permanently toxic state.  Toxic chemicals leached from dialysis tubing, infection from the treatment process, hypotensive crises, etc., also contribute to the shortened life expectancy.  Life expectancy is much improved by transplant, with non-diabetics gaining an extra 50% average lifespan, and diabetics under 60 more than doubling their life expectancy.   

No disrespect but those number don't mean nothing. I know MANY people who have been on for 20+ years and are doing VERY WELL. Everybody is different, and every one reacts differently to dialysis. I believe it has a lot to do with your will to live. Your mental state, has a lot to do with you physical well being. Believe me If you read my bio (on this site) you will understand how I am a fighter! Also as I said before "when it's your time, it's your time" we can't control our destiny or fate. All we can do is live each day to the fullest. Those numbers are very sad looking indeed but they don't mean shit.
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- Epoman
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Bear
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« Reply #6 on: August 24, 2006, 06:17:57 PM »

...and of course, those figures are largely based on 'old' data...in another ten years we'll have data covering us lot, as we are now.
It will be based very largely on in-center dialysis patients, getting their more-or-less inadequate dx of 3x4, 3x5 if they're lucky.
People who may have a s much as 5liters on after the weekend, when they front up for their #1 dx of the week...and so on.
But let's see how they (hopefully! ;D) go up, when Epo', Gus, Pierre, Bill, myself and all the other machine-at-home crew have a
few years'worth of figs. to add to these studies.
Remember the old age too :-  "Lies, damned lies...& statistics!"  ::)
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Rerun
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« Reply #7 on: August 24, 2006, 08:51:09 PM »

But you HAVE to admit, barring any unforeseen car accidents, a renal patient has a shortened life.  It is just idiotic to not realize that.  Life after dialysis is just frosting.  You should by all means be dead!  So, just count every day as a day extra.

I believe Stauffenberg's (Danovitch) numbers are probably correct.  We are talking "averages".  Most renal patients are old farts and have other medical issues.  Yes, I know people on dialysis for 20 years and I've known people who lived maybe 3 years. 

But, don't lose any sleep over it.
« Last Edit: August 24, 2006, 08:54:56 PM by Rerun » Logged

Bear
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« Reply #8 on: August 24, 2006, 09:32:14 PM »

.  Life after dialysis is just frosting.  You should by all means be dead!  So, just count every day as a day extra.

...which is why I've always (since ESRF) said I wanted a tee-shirt with "Dead Man Walking" on it!   ;D
...I must get around to ordering a couple.
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Zach
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« Reply #9 on: August 25, 2006, 09:23:32 PM »

Sometimes it's luck.  Sometimes it's your attitude.

I've been around the dialysis chair for almost 25 years ... and I plan to continue for a while longer!     ;)
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In-center uninterrupted hemodialysis since 1982--32 YEARS on March 3, 2014 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06    ;)
Work full time.  I make films.

Just the facts: 75 kgs. (about 165 lbs.)
Treatment: Tue-Thur-Sat   5 hours, 2x/wk, 6 hours, 1x/wk
600 dialysate flow (Qd)  ~400 blood pump (Qb)
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI (+/ -):  2,625 Calories, 90 grams Protein per day.

"Living a life, not an apology."
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« Reply #10 on: August 26, 2006, 10:39:03 AM »

I don't understand those figures.  My brother was a BAD diabetic (he had even gone blind from diabetes) and he was 51 when he started dialysis and he died at 61 - which mean he had 10 years.
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goofynina
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« Reply #11 on: August 26, 2006, 10:42:44 AM »

Quote
You know what don't worry, when it's your time, it's your time. You can live a long time on dialysis. It was very unprofessional of the nurse to make a comment like that even in jest. I am 34 and have been on dialysis since 21 with NO transplant and member "Zach" has been on like 24 years, no transplant. Hell we NEVER know when we are going to die, you may die in a car accident totally unrelated to your health. So do me a favor in the future ask your questions here on this site, I have found many nurses and techs are just their for a paycheck and don't really give a crap about you. Granted there are some wonderful techs and nurses out there who really do care and want to make a difference.

- Epoman
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I would listen to the Big Guy if i was you... it is true, there is no way of telling how long you will live on dialysis,  so many freak accidents nowadays, you just dont know what can happen and when, where, why and so on,  so DONT WORRY, BE HAPPY :)
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« Reply #12 on: August 30, 2006, 09:14:42 AM »

Still here and in my 24th year at aged 30. My parents were given rather a few life expectancies and I have exceeded them all by miles as medical care has changed.
It really does do your head in though as I saw a surgeon who refused to do a transplant and then told me how long I probably had to live without one-not exactly helpful. This has been a shadow over me for a very long time because once said it can't be undone. Whats worse is now I have found out he was wrong and I could have had a transplant all along. DOH!!!
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Shades_Elfen
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« Reply #13 on: August 30, 2006, 02:46:39 PM »

...  I may seem callous to say it but... who really gives two flying figs about what the Docs and Professional people say about life expectancy?

we all are going to die one day, could be tomorrow, could be in fifty years. either way : Carpe Momentum Seize the Moment

then again, I'm probably one of the youngest here, and probably have a different veiw-point to others.

so i leave you with these words : live life, and have fun doing it!!
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BigSky
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« Reply #14 on: August 30, 2006, 04:11:10 PM »

I think it was a stupid comment to make anyway cos I got enough on my plate without having to worry about long I may or may not live for!!!

Well next time don't ask the question if you are not prepared to hear the answer.


Otherwise why worry.  No one controls their time to die.  When it happens it happens.  Live for the here and now.








« Last Edit: August 30, 2006, 05:23:44 PM by BigSky » Logged
goofynina
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« Reply #15 on: August 30, 2006, 05:30:02 PM »

Right on Big Sky, i am with you 110%,  now where is my shot of tequila ;) 
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« Reply #16 on: August 30, 2006, 08:52:27 PM »

Still here and in my 24th year at aged 30.
Wow am I understanding you have been on dialysis for 24 years of your 30 year life?
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« Reply #17 on: August 31, 2006, 06:34:18 AM »

I have been on dialysis since aged 6 almost completely non stop. I had 2 transplants as a paediatric patient and they didn't last at all and were a disaster-it was in the very early days. I then decided I was fine on dialysis and that is how I stayed. I did really well on PD but changed to haemo 7 years ago and I am not nearly as well on that. So I decided to put myself back on call for a transplant and that is when they said I couldn't do it due to other problems. However they made a mistake with that one and the problems never existed so I am on call for another in the hope I may get lucky-my chance of success is low as I have developed secondary issues but I can but hope. :)
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« Reply #18 on: August 31, 2006, 07:42:15 AM »

i realize there's no point in taking averages of life expectancy on dialysis to give yourself a set life expectancy, but i have to say i appreciate those figures, at least in that they're very helpful and important in tracking and reporting in the dialysis industry, whether it's for national trends in comparison to other countries' outcomes, or for individual dialysis centers in comparison to other centers, tracking different age groups and different kidney diseases, the effectiveness of different treatment types, lengths, etc.

[rant] i wish those life expectancy figures would make more of a difference in allowing for funding for you all to get (those of you who want them  ;)) more dialysis treatments. it's ridiculous the funding available for dialysis patients in this country is enough to cover a 10% replacement of renal function. it just makes me angry when so many of the patients i work with suffer great lengths and i wonder if many wouldn't have a longer and happier natural life expectancy with more dialysis. [/end rant]
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« Reply #19 on: August 31, 2006, 08:55:53 AM »

i really don't want to know. just like a healthy person doesn't know when they're gonna die.
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« Reply #20 on: August 31, 2006, 11:15:14 AM »

We'll die when we're meant to and not before.
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« Reply #21 on: August 31, 2006, 04:02:52 PM »

[rant] i wish those life expectancy figures would make more of a difference in allowing for funding for you all to get (those of you who want them  ;)) more dialysis treatments. it's ridiculous the funding available for dialysis patients in this country is enough to cover a 10% replacement of renal function. it just makes me angry when so many of the patients i work with suffer great lengths and i wonder if many wouldn't have a longer and happier natural life expectancy with more dialysis. [/end rant]
Do I really want more time on the dialysis machine? Like I am not already at risk of infection at the center the entire time I am there!  I would want to raise the time I spend there? NOT!  Twelve hours a week is enough for me right now.  I know more dialysis makes you healthier, but no way.  I need my life right now.
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Remember your present situation is not your final destination.

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« Reply #22 on: August 31, 2006, 04:20:53 PM »

It wouldnt bother me to have a longer time.  Not like the day isnt about shot anyway when going to dialysis. ;)
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Bear
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« Reply #23 on: August 31, 2006, 05:40:52 PM »

We'll die when we're meant to and not before.
   Oh yeah?  I don't agree. Many of us (me included) should already -BE- dead.  I was told when I first walked, well shuffled really,
thru the renal unit's doors in Feb'04, that I had mere weeks to go, without treatrment, before I would fall into a coma & die.
I frequently refer to myself as the 'dead man walking' and with good reason - I AM being kept alive (and in pretty good shape,
these days) by artificial means. What's more, I intend to keep utilizing them for an indeterminate amount of years!  ;D
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kitkatz
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« Reply #24 on: August 31, 2006, 08:16:01 PM »

Well Bear, ya ain't dead yet, so it must not have been your time to go.  I was told by the dialysis nurse that dialyzed me the first time in hospital, that she had not expected me to make it through the night.  She was very surprised when she came back two days later and there I was looking better. She told me this as I was smiling at her and telling her I felt much better thank you and to please explain dialysis to me.
Almost eight years later here I am going strong.
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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.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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