I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: Stoday on July 15, 2009, 07:38:43 PM

Title: Surviving dialysis
Post by: Stoday on July 15, 2009, 07:38:43 PM
I was looking through some dialysis related stuff on the web and I was horrified to find this statement in the New England Journal of Medicine:

In the United States in 2004, approximately 100,000 people began receiving kidney-replacement therapy for end-stage renal disease, and 335,000 people were receiving ongoing treatment with dialysis. In some cases, patients are treated with dialysis for decades, but overall outcomes are disappointing.

The 5-year survival rates between 1995 and 1999 were under 35% for both hemodialysis and peritoneal dialysis. Patients treated with dialysis are hospitalized on average twice a year, and their quality of life is often low.

Is this about right? Is the probability of my demise in the next 5 years really 65%?  :o

Here's a link Click for pdf (http://enotes.tripod.com/uremia2007.pdf)

Title: Re: Surviving dialysis
Post by: Hanify on July 15, 2009, 07:43:12 PM
I take no notice of these articles.  There are plenty of people surviving for many many years - and I'm gonna be one of them.  Zach is my hero!
Title: Re: Surviving dialysis
Post by: jbeany on July 15, 2009, 08:39:19 PM
Yes, the stats are pretty depressing.  You can, however, make yourself an exception.  It takes maintaining an active role in your own health, and constant effort to keep to the diet and fluid restrictions.  You can live a very long life on dialysis if you can keep the nasty side effects like heart damage to a minimum.
Title: Re: Surviving dialysis
Post by: Rivy on July 16, 2009, 05:28:34 AM
I heard from one of my techs (nice African guy) that patients on dialysis treatment never die no matter what.  I've seen patients on dialysis for more than 10 to 20 years.   They just keep coming back.  That is if you have a heart attack, but never from dialysis treatment.  :rofl; I seen patient with high  :bandance; Potasim and  :beer1; Phosphorus and still coming back to do dialysis week after week .  I still see the patients returning after thinking they we're gone.. :oops;  You live to a ripe age, Rivy




Edited: Fixed smiley errors - okarol/admin
Title: Re: Surviving dialysis
Post by: willowtreewren on July 16, 2009, 05:30:12 AM
Hi, Stoday,
The statistics really are depressing, but I keep reminding myslef that there are many factors that change the outlook for individuals.

Being proactive and educated about your treatments is one of those factors.  :2thumbsup;

Aleta
Title: Re: Surviving dialysis
Post by: dwcrawford on July 16, 2009, 08:20:24 AM
The suicide rate among dialysis patients is also very high.  But then, of course they die.  Most of us will die somehow and some way.  The saying goes something like "life is a death sentence".

I've come to believe that either way you go, life on dialysis or death from kidney disease, it takes an enormous amount of courage.
Title: Re: Surviving dialysis
Post by: okarol on July 16, 2009, 09:28:42 AM

You might be interested in these other threads:

Life expectancy on dialysis. http://ihatedialysis.com/forum/index.php?topic=1153.0

What is the longest a patient has survived on dialysis?
http://ihatedialysis.com/forum/index.php?topic=9672.0

What is the longest a recipient has survived with a kidney transplant?
http://ihatedialysis.com/forum/index.php?topic=9656.0
Title: Re: Surviving dialysis
Post by: Deanne on July 16, 2009, 10:53:27 AM
I didn't read the whole article yet, but I quickly skimmed through it and didn't see that their numbers were adjusted for age. If you're 90 years old and just starting dialysis, chances are, you aren't going to spend the next 40 years on dialysis.
Title: Re: Surviving dialysis
Post by: keefbeer on July 16, 2009, 12:33:51 PM
Bollocks to statistics, I got my legs slapped from the Mods  for comments I made last week with regards to new age holistic remedies ( sauna dialysis ). I believe worrying about death rates and waiting times can become a self fulfilling prophecy, as the time goes by you think your odds decreasing. Why not think that the longer you live the better your life is going and not a ridiculous race against generic statistics.
We all have a life threatening/shortening illness learn to accept it and make the most of your time here, do,nt dwell on how things where or how crap they can be!
Do not be side tracked by new age nonsense or negative statistics, enjoy the life you now have to live.

[Translation].....bollocks, British= Balls, former colonies.


Keef   
Title: Re: Surviving dialysis
Post by: dwcrawford on July 16, 2009, 01:02:13 PM
well said, keefbeer
Title: Re: Surviving dialysis
Post by: kitkatz on July 16, 2009, 05:00:50 PM
So what do we do about a shorter life? Live in the NOW! Make your bucket list and go for it! Do things you never did before. Learn new things. Make your life right with   the people around you. I am slowly working on my lists.
Title: Re: Surviving dialysis
Post by: dwcrawford on July 16, 2009, 06:01:53 PM
You are not a statistic...  Get hit by a truck (watch it Sluff) or die from electrocution through a faulty dialysis machine?  Anyway, People don't die from dialysis.  They often die while on dialysis but from the thing that put them there to start with.  And what about those who live years and years?  Dialysis could extend your live past your normal lifespan.

But that's  no good either.  There a song from Porgy and Bess by Sportin Life that goes something like:
Methusla lived 900 years, methusla lived 900 years.  But who calls that living  when not Gal with give in to no man that's 900 years.

Who is doing all the traveling?  Not someone thinking about their shortened life span that's for sure.
Title: Re: Surviving dialysis
Post by: David13 on July 16, 2009, 06:02:24 PM
Can you share some of your list, kit? 
Title: Re: Surviving dialysis
Post by: okarol on July 16, 2009, 06:35:19 PM
So what do we do about a shorter life? Live in the NOW! Make your bucket list and go for it! Do things you never did before. Learn new things. Make your life right with   the people around you. I am slowly working on my lists.

That reminds me of this thread http://ihatedialysis.com/forum/index.php?topic=6400.0 What's on your bucket list?

They told us Jenna had a life expectancy of 30 years old when she was diagnosed at 15. Things have changed a lot over the last 8 years - I am hoping her chances are better now.
Title: Re: Surviving dialysis
Post by: RichardMEL on July 16, 2009, 09:39:26 PM
meh at those stats. I reckon 70% of the patients in my unit (yeah, there's another stat for you :) ) are over 70 years old. That would skew ANY statistics in terms of survival rates significantly. It would be intereresting to know those that passed away directly due to ESRD/dialysis vs. other things. I mean you could get pneumonia while undergoing dialysis, but the two things would be totally seperate....

Title: Re: Surviving dialysis
Post by: Stoday on July 16, 2009, 10:15:22 PM
Thanks for all your comments. I found Okarol's link to Life Expectancy on Dialysis to be particularly useful because it contained confirmation of the depressing statistic I'd originally quoted.

Pelagia's note on Short Hemodialysis (http://ihatedialysis.com/forum/index.php?topic=1153.100) says it's 2/3 times better than the normal 3 days a week dialysis. 5-year survival was 68%. If that's 2/3 times better than 3day hemo, then you'd expect the latter's survival rate to be between 23% and 34%, somewhat worse than the original statistic.

Hey — if I were the depressive type I'd be in the depths now. That old thread included contributions from Epoman and goofynina, who are no longer with us as well as Flip, who was determined to "be around for a long time yet" but stopped posting last year...

On the other hand, Zach is still here to balance the scales.  :bow;
Title: Re: Surviving dialysis
Post by: Stoday on July 16, 2009, 10:52:25 PM
meh at those stats. I reckon 70% of the patients in my unit (yeah, there's another stat for you :) ) are over 70 years old. That would skew ANY statistics in terms of survival rates significantly. It would be intereresting to know those that passed away directly due to ESRD/dialysis vs. other things.

I have the mortality statistics for England & Wales for 2007, taken from death certificates by the UK government. The 5-year survival rate for 70 year olds is 88%, i.e. 12% of 70 year olds can expect to die in the following 5 years. That suggests that if the hemo death rate were 65%, 53% would be from ESRD and the other 12% from other causes.
Title: Re: Surviving dialysis
Post by: circleNthedrain on July 16, 2009, 11:23:20 PM
Just gotta be stubborn as an army mule...and a little luck don't hurt either!  I started D in '79, did PD for 10 years, had 2 transplants and now back on hemo.  Keep fighting!
Title: Re: Surviving dialysis
Post by: Zach on July 17, 2009, 03:44:45 AM

Just gotta be stubborn as an army mule...and a little luck don't hurt either!  I started D in '79, did PD for 10 years, had 2 transplants and now back on hemo.  Keep fighting!


I'm with you, circleNthedrain!

8)
Title: Re: Surviving dialysis
Post by: Rerun on July 17, 2009, 07:31:49 AM
I'm ready to go.  I know when I get to heaven that I'm going to be pissed that I waited so long!

Title: Re: Surviving dialysis
Post by: dwcrawford on July 17, 2009, 07:37:43 AM
I know I've said this before, Rerun, but I'll say it again.   It takes courage to stay just as it does to go.  Well, there is a major difference.  If you stay awhile you can always change your mind and go, but if you go... well, that's pretty much a done deal.  Believe me,  I understand.  Been there a couple of times the last few months!
Title: Re: Surviving dialysis
Post by: RightSide on July 17, 2009, 05:06:54 PM
I didn't read the whole article yet, but I quickly skimmed through it and didn't see that their numbers were adjusted for age. If you're 90 years old and just starting dialysis, chances are, you aren't going to spend the next 40 years on dialysis.
The rule of thumb I've seen in the medical journals is that whatever your life expectancy would have been without ESRD, it's going to be only one-third as long with ESRD.  Thus that automatically adjusts for factors of age and comorbid conditions.

Title: Re: Surviving dialysis
Post by: boxman55 on July 17, 2009, 08:32:56 PM
I'm ready to go.  I know when I get to heaven that I'm going to be pissed that I waited so long!
Rerun you are very special. i think everyone should be prepared to go but also try and hang on for as long as possible...Boxman
Title: Re: Surviving dialysis
Post by: Wallyz on July 17, 2009, 09:36:06 PM
The life expectancy is short, not because they are on dialysis, but because they are not dialyzing enough.  The people I have seen die in the chair are those who skip treatments and eat crappy food.
Title: Re: Surviving dialysis
Post by: KarenInWA on July 17, 2009, 11:36:27 PM
The life expectancy is short, not because they are on dialysis, but because they are not dialyzing enough.  The people I have seen die in the chair are those who skip treatments and eat crappy food.

Eat crappy food?  Oh boy, I'm in trouble..... :o

Is Trader Joe's White Cheddar Cheese Popcorn considered "crappy" food?  Whenever I open a bag of that stuff, I can't stop eating it!

KarenInWA
Title: Re: Surviving dialysis
Post by: circleNthedrain on July 18, 2009, 12:34:30 PM
Crappy....maybe.  Delicious....definitely!
Title: Re: Surviving dialysis
Post by: okarol on September 17, 2009, 05:01:52 PM

Hey — if I were the depressive type I'd be in the depths now. That old thread included contributions from Epoman and goofynina, who are no longer with us as well as Flip, who was determined to "be around for a long time yet" but stopped posting last year...

On the other hand, Zach is still here to balance the scales.  :bow;

 :pray; Prayers for Epoman, Goofynina and Flip...

 :cheer: Yay for Zach!
Title: Re: Surviving dialysis
Post by: RightSide on September 17, 2009, 08:38:35 PM
I was looking through some dialysis related stuff on the web and I was horrified to find this statement in the New England Journal of Medicine:

The 5-year survival rates between 1995 and 1999 were under 35% for both hemodialysis and peritoneal dialysis. Patients treated with dialysis are hospitalized on average twice a year, and their quality of life is often low.

Is this about right? Is the probability of my demise in the next 5 years really 65%?  :o

Well, that's on the average for patients living between 1995 and 1999.  Are you average?   ;D  And what year is it on your world?   ;D

ESRD, as I'm sure you know, affects more old folks than younger folks.  So that tends to make the numbers look worse for "average" folks (under 60 years of age).

Plus, dialyzers were not anywhere near as efficient, 15 years ago, as they are now.  And meds were not as advanced as they are now.  Things have improved since these data were collected.

But having said that, I'll give you the hard truth:

Your life expectancy with ESRD and dialysis is likely to be significantly lower than it would have been if you had never developed ESRD.  Unless you get a kidney transplant and can stop the dialysis.

And the paper you cited, gave some possible (but as yet unproven) reasons why this might be so:  It could be due to dialysis only inadequately removing all toxins; or it could even be due to continual exposure of the body to the ostensibly "inert" materials of the dialysis equipment.

There are a couple of markers that can give you a better idea where you stand:

Albumin:  This is a marker for protein intake.  Too low and it indicates possible malnutrition.

C-reactive protein:  This is a marker for chronic inflammation.  Too high and it indicates inflammatory disease of some kind.

If you have both malnutrition and chronic inflammation, this can indicate what is known as "Malnutrition-inflammation complex syndrome." This is potentially LETHAL for us dialysis patients--a much lower life expectancy.  It behooves you to aggressively treat both the malnutrition and the inflammation, if you suffer from those conditions.



Edited: Fixed quote tag - okarol/admin
Title: Re: Surviving dialysis
Post by: spacezombie on September 18, 2009, 02:35:36 PM
The thing about survival rates is that they just don't matter. You could be one of the healthiest people alive and end up getting stuffed in a wall like that Yale college student. You just never know what is going to happen in your life. All we can do is try and stay as healthy as possible. Everyone dies eventually, I figure our shot is pretty similar to that of the general public.  :beer1;
Title: Re: Surviving dialysis
Post by: Bajanne on September 18, 2009, 02:50:52 PM
The thing about survival rates is that they just don't matter. You could be one of the healthiest people alive and end up getting stuffed in a wall like that Yale college student. You just never know what is going to happen in your life. All we can do is try and stay as healthy as possible. Everyone dies eventually, I figure our shot is pretty similar to that of the general public.  :beer1;

I'm with you!  I am determined to live as long as I can!  My brother was very ill when he started dialysis.  He was already going blind because of his diabetes.  At first they only dialysed him twice a week.  The doctors in the US had said he would last less than 5 years like that, but they still only dialysed him twice at home. Then after a few years they dialysed him 3 times.  Yet with all that against him, he lasted 10 years, only succumbing to cardiac arrest.
Title: Re: Surviving dialysis
Post by: dwcrawford on September 18, 2009, 02:55:49 PM
That is so true.  I was going to die before I started it and  now I'm alive.  Don't forget about the proverbial Mac Truck! 
Title: Re: Surviving dialysis
Post by: lucyskid18 on September 22, 2009, 10:49:12 PM
Nobody can predict these things.... were all different and have different strengths!!! We live as long as we can carry and maintain our bodies!!!! The day we die is the day we decide to give up on ourselves and our life!!!!!! dONT worry!!!!! Be happy!!!!!!
Title: Re: Surviving dialysis
Post by: plugger on September 23, 2009, 04:56:57 PM
I was looking through some of the posts at DialysisEthics and I recalled a post about prolonging a person's life on dialysis.  The post is some years old, but it still looks like good advice:

http://www.dialysisethics.org/forum/viewtopic.php?t=40

Hope it helps!