Surviving dialysis

[Stoday]

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%? 

Here's a link Click for pdf

[Hanify]

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!

[jbeany]

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.

[Rivy]

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.  I seen patient with high  Potasim and  Phosphorus and still coming back to do dialysis week after week .  I still see the patients returning after thinking they we're gone..   You live to a ripe age, Rivy




Edited: Fixed smiley errors - okarol/admin

[willowtreewren]

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. 

Aleta

[dwcrawford]

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.

[okarol]

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

[Deanne]

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.

[keefbeer]

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   

[dwcrawford]

well said, keefbeer

[kitkatz]

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.

[dwcrawford]

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.

[David13]

Can you share some of your list, kit? 

[okarol]

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.

[RichardMEL]

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....

[Stoday]

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 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. 

[Stoday]

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.

[circleNthedrain]

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!

[Zach]

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!

[Rerun]

I'm ready to go.  I know when I get to heaven that I'm going to be pissed that I waited so long!

[dwcrawford]

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!

[RightSide]

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.

[boxman55]

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

[Wallyz]

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.

[KarenInWA]

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.....

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