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M3Riddler
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« Reply #175 on: January 02, 2013, 09:22:01 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.

Stauffenbert,

I would throw those statistics right out the window. No one knows the life expectancy, but the mighty one above.  There are just too many factors that incluence this.  As someone stated, its usually not dialysis that gets you, but the compliacations from other systems that the kidneys have such a great affect on.   I have been on dialysis for over 20 years as well as having 3 transplants. So including transplants, I'm giong over 30 years.   
Having a kidney transplant doesnt necessarily increase/decrease anything.    A transplant is not a cure, but rather another treatment method.   A cadaver transplant is pretty much the same as being on nocturnal dialysis.   
The least adequate dialysis method is in center as you are only receiving approx 12 hours per week. No where near enouph to rid the body of toxins. there is alway a net gain.     
It also depends on what caused our kidneys to fail along with any other conditions we have.  So no one really knows.. There are just too many factors to list that determines life expectancy.

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kitkatz
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« Reply #176 on: January 13, 2013, 08:47:54 PM »

I am with JBeany, part of the zombie walking dead.
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« Reply #177 on: January 13, 2013, 09:51:07 PM »

I'm only 7 weeks into this whole thing.  This type of scares me and probably is the last thing I should be reading.  crap.
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amanda100wilson
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« Reply #178 on: January 14, 2013, 05:24:34 AM »

I'm still here 24 years on with dialysis and deceased donor transplant.
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ESRD 22 years
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  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

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« Reply #179 on: January 14, 2013, 05:58:33 PM »

26 years since hubby was diagnosed with kidney failure and after 16 years on dialysis he is still going strong. Statistics are just statistics.  Even people who don't start dialysis until they are in their 90s are included in those statistics!!
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Mr Pink
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« Reply #180 on: January 14, 2013, 06:25:35 PM »

As one of my teachers used to say; there are lies, damned lies, and statistics.
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CebuShan
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« Reply #181 on: January 14, 2013, 08:14:57 PM »

I started Dialysis on April 28, 2010. Still going strong and still hating it!   :rofl;
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M3Riddler
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« Reply #182 on: January 15, 2013, 12:18:57 AM »

I'm going on a little over 22 years with Dialysis as well as 6 years between 3 kidney transplants... ESRD since age 10. 
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noahvale
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« Reply #183 on: January 15, 2013, 05:58:22 AM »

^
« Last Edit: September 21, 2015, 07:42:40 PM by noahvale » Logged
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« Reply #184 on: January 15, 2013, 09:06:34 PM »

I'm only 7 weeks into this whole thing.  This type of scares me and probably is the last thing I should be reading.  crap.

21 years of hemodialysis and 14 years with a cadaver transplant = 35 years esrd

I started on hemodialysis at age 22.

 :2thumbsup;
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Jenna is our daughter, bad bladder damaged her kidneys.
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Found a swap living donor using social media, friends, family.
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« Reply #185 on: January 16, 2013, 12:53:44 AM »

I think most if not all ESKD sufferers will ask this question. I did.  In fact I researched it and it provided direction on treatment.  The very intensive state treatments, while free and appreciated, are capped to 12 hours per week for funding reasons. 

I was always tired, the clearance levels where too low to sustain full time employment.  There were loads of complications, anal policies on fluid removal regardless of cost, and the 15 hours away from family was a big problem.

I pushed very hard to get HomeD training and now have been on it for over 1 month.  8 hour sessions are such a big difference.  Far fewer complications, no fluid loading, no cramps (yay), and i'm exercising again.

I just wake up, disconnect and go to work :)

But the best part is that the blood results are 50% improved on the facility sessions, and according to research papers I'll probably live a lot longer..     
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Ian Chitty
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(<2yrs) 1Y in-center, 9 months HomeD, 4 weeks tourism dialysis (Philippines/Singapore)

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The aim of KiwiMedTec is to develop online solutions and partnered networks for dialysis patients, to make coping with kidney disease a little bit easier.
amanda100wilson
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« Reply #186 on: January 16, 2013, 04:44:14 AM »

janch, what dialysis facilitynare you with?  getting extended home hemo right off,is great.  you must be with a orogressive unit?
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ESRD 22 years
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  -Transplant 10 years
  -PD for 8 years
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Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
geoffcamp
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« Reply #187 on: January 16, 2013, 05:43:39 AM »

I have to say the numbers are depressing. I try not to look!!!  I've been doing this since 1996 so 15 years now. I was 28 when I began my journey. I am proud to say I can do pretty much anything I put my mind to. Not to say there are not really crappy days but for the most part I can run, play tennis, go to the beach, have an adult beverage occasionally and hang with or do better than most of my peers in their 40s like me. Attitude. That's is what is all about. I've had a rough time lately focusing in on the wrong things but its me not the treatment. It's in our nature to question and wonder and I've decided to get out of the "funk" we all get in from time to time dealing with a chronic illness like we have. I certainly never expected to live this way but I'm going to make the best of things. I'm sure you will too!  It would not make sense if you didn't have these concerns it means you are a normal human!!  Plus it shows you care and want to do the best you can to lead the best most active life possible. In my mind I've always said what really is the true life expectancy of anyone!  I know it's probably weird and a bit morbid but heck anyone could loose their life in a car, plane or other freak accidents at any time. I hope you will do the best you can to live everyday enjoying what you can do and finding new ways of enjoying yourself!!  Good luck and best regards, Geoff
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
christijo
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« Reply #188 on: January 25, 2013, 05:38:56 PM »

Those figures were statistics so we cant refute statistics. They are facts taken at an average. Some of you people out there are not average. You are real heros and fighters and have defied all odds and get up before the count is down and fight.  Yes, alot has to do with fighting and the will and the "want to" My hubby hasnt wanted to live in 5 years. He is not a fighter yet afraid to go off dialysis and afraid to die. He went into this with heart failure, dementia, 7 strokes, in a walker/wheel chair, legally blind, severe diabetes. He has been on dialysis 7 months. Everyday is a challenge, a nightmare. I dont think for him it will last 5 years like the statistics. They allowed him the decision because his dementia wasnt as bad then. I will never give him my opinion because its his life. I will continue to fight for him. My opinion is if you hate life and your kidneys are gone, and heart failure is so bad and you suffer everyday and no day is a good day then why go on. It doesnt make since to me when you hear someone ask God to take your life day after day and let you die and then continue on with dialysis. God has already spoken. The kidneys are down, heart is almost down, eyes have went, pancreas is almost gone, end stages of diabetes. Yet, I say Nothing. I let him make the decisions. What a mess!!! I am happy for the rest of you though that you have some good things happening in your life and you are living life.Some restraints and some setbacks but you are finding some joy in life still. Dialysis is not for everyone though. I think it is for fighters and those that really want to get something out of life yet.  He was told that dialysis might turn some things around for him so he tried it. But he has too many things against him. But now is afraid to go off. I could never in a million years shut him off. My job is to support him in whatever he wants to do even if it dont make sense and seems like a continuation of daily suffering. I am  in suffering with him.
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geoffcamp
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« Reply #189 on: January 27, 2013, 08:47:05 AM »

It's about quality of life too. If things progressively get worse as hard as it is maybe you should confer with doctors and specialists to see what is best for his quality of life. I really really hope dialysis will help and he will experience improvement!  All my best your in my thoughts. Ever need to vent do it!!  My email phone number is posted so feel free to contact me for any reason!  I know it must be very difficult. We are your fiends and support group here!  Use us!  Good luck. Best regards, G.
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
christijo
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« Reply #190 on: January 27, 2013, 08:22:05 PM »

Thank you Geoff for your kind words. I am not used to kind words. Only judgement and abuse and criticism. This is soooo much help and support. Not to be judged. Not to be verbally abused. His family and our kids and neighbors and even healthcare. Everyone knows what I should do and should be doing. But no one knows what its like to be a servant in shoes and the day never ends and no good days. I dont have the option of nursing home respite. Our insurance dont pay for it. thank you again. God Bless.
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geoffcamp
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« Reply #191 on: January 27, 2013, 09:07:03 PM »

That is the purpose of this board. Your a great person doing everything you can to make the best of a no win situation. That stinks and I feel for you. There are a lot of wonderful people here that encourage, motivate and teach me soooooo much. It is my saving grace when I have " one of those days"!!  Good luck to you, I'm sure you will find a way to do what ever is right. Again, you are in my thoughts. G.
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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
malaka
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« Reply #192 on: March 26, 2013, 12:20:02 PM »

If you want to learn life expectancy for dialysis patients, just ask your friendly life insurance company.  They are in the buisness of gambling that you'll live longer than expected.  They won't insure us since life expectancy is so unpredictable.  Some live for years, others don't.  Much depends (per my Medline research) on patient compliance and comorbidities.  Some people eat and drink what they want.  Some have preexisting heart conditions, etc.  Some start well into their 80's, others much younger. 

My advice:  don't max out your charge cards since you don't know if you drew the short straw or one of the long ones. 

The reality is that one's life expectancy is shorter than for non-dialysis patients.   Its 20+ years for transplanted patients, and about 5+/- years for dialysis patients on average (which includes the 85 years olds with multiple heart attacks who just can't stop eating bananas, etc. 

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« Reply #193 on: March 26, 2013, 07:21:49 PM »

I talked with the Missouri kidney foundation yesterday and was told by the lady on the phone that I should be dead by now.
So with that in mind can someone explain how we can put men into space, send rovers to other planets but doctor's that specialize in our disease don't really know squat.  :stressed;  :sarcasm;
The lady then asked me why I even take my HBP meds or my diabetic drugs and I told her I wanted to enjoy what's left of my life and not to speed up my death. That kind of shocked her because I refused dialysis.  She said I sounded very coherent and I thought about the ignorant thread. :)  Heck even hospice won't take me yet.

So forget whatever someone says about your life span. It's your life.

Cheers,
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« Reply #194 on: May 14, 2013, 05:01:26 AM »

Hi amanda100wilson,  I'm in New Zealand, Auckland city.  2 years ago they build a $60m satellite unit off side of the local hospital (north shore). It has 24 bays and a PD training unit. Thats where i started

I understand they are currently expanding that unit and building a 2nd unit with a HomeD training facility.

Yes HomeD training is in hot demand as they try to restrain costs by moving able bodied/stable people to home.  It makes financial sense as the health system is govt funded. Most non-main city suffers are HomeD.  it also makes health sense as i get 2.5 times the treatment for a lower cost.

NZ and Australia are reported to be top league states for HomeD.  The US and Germany are at the bottom, primarily due to the private nature of the health system (HomeD takes away a clinics income).
   
I'm youngish (40) so i expect I've at least doubled my life expectancy with this plan. 
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Ian Chitty
ESRD suffer, IT specialist, and business owner
(<2yrs) 1Y in-center, 9 months HomeD, 4 weeks tourism dialysis (Philippines/Singapore)

https://kiwimedtec.com
The aim of KiwiMedTec is to develop online solutions and partnered networks for dialysis patients, to make coping with kidney disease a little bit easier.
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« Reply #195 on: July 24, 2013, 09:08:27 PM »

 While most of you dread thinking about dying in 5 years maybe, maybe more, my husband and I shudder at the thought of him going 5 more years of suffering in dialysis.  He cant shut it off. He is afraid. He is in heart failure, 7 strokes, end stages of diabetes, etc. He is soooo weak, can hardly even shuffle. Has brain damage also. Wont give up on dialysis yet suffers horribly with it. I have been housebound with him and caring for him 5 years. God have mercy on him.
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« Reply #196 on: July 26, 2013, 10:40:57 AM »

I went on May 1st, 1973 and I didn't thing I'd make it through a year, then 2, 3, 5.
After 5 years I started loosing count and became busy with so many other things (marriage, job, divorce, transplant, flying, transplant rejection, job relocation, retired, trading... etc.).

Today, I follow the market, swim, exercise bike, light weights and yes... dialyze.
 
My only suggestion is watch you fluid and diet and keep your mind & body active so move
your feet and your arse will follow and don't worry about statistics. I gotta go and swim some laps.
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« Reply #197 on: March 20, 2016, 11:06:47 AM »

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.
Another oldie that springs back to life. (HA)
Had to chuckle reading this post, as it has a lot of 'ponder' in it, and a touch reality.
Enjoyed this post, plus all the rest of them. Bunch of coherent and logical points to ponder here.
In that long before this temporary kidney event hit, I had already calculated life expectancy averages for kidney/dialysis folks. So was/is interesting regards all the info in this topic. Actually was one of the first things I had looked up after I had found this site. Was based on a neighbor that was quite overweight and diabetic.
Regardless my numbers showed five (5) years as an average life expectancy  .

Yup, am an 'old fart', with little or basically no other medical issues.
Yup, realistically and overall, every dialysis session will suck a 'certain' amount of 'life expectancy 'from ones life expectancy chart.
Yup, there are a large number of 'on dialysis' exceptions as to when one kicks the bucket.
Yup, depending on the method used, most all numbers can be mathematically manipulated, toward a desired outcome.

Bringing some of the thoughts/suggestions into ones protocols, can beneficially alter ones life expectancy chart
Doing nutritional protocols in my estimation, can dramatically slow down that life shortening effect, which dialysis is pulling out.
Aside from all the above, worrying, overdone,  has never correcting any situation.
So, be happy, and start counting those blessings you are racking up and 'live until you die'.
 



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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
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« Reply #198 on: March 20, 2016, 02:57:46 PM »

... I am not sure that I am able to wholeheartedly agree with the idea of "resurrecting" old posts from years ago,
especially since quite a few of the people writing years ago are no longer with us ...
Would it not be a much kinder idea if we could let past members and their thoughts truly Rest In Peace ?
... Of course, that does not mean we should not research old posts etc., but ... as I have already said above...
Kristina. :grouphug;
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« Reply #199 on: March 20, 2016, 04:44:18 PM »

... I am not sure that I am able to wholeheartedly agree with the idea of "resurrecting" old posts from years ago,
especially since quite a few of the people writing years ago are no longer with us ...
Would it not be a much kinder idea if we could let past members and their thoughts truly Rest In Peace ?
... Of course, that does not mean we should not research old posts etc., but ... as I have already said above...
Kristina. :grouphug;
To All IHD Readers and Kristina,

Point well taken Kristina.

Here is how I view  the "resurrecting" of old posts :
There are new folks coming in to this forum seeking information in/on their health circumstances.
Finding of posts relating to specific conditions is not exactly an easy process. Even using the 'Search' function is not always productive, unless the 'Key' words are highly germane to the question. I've looked and searched for certain information here (IHD), and not found what I was looking for, yet eventually I find that same type of information sought, showing up under nonspecific conditions.

That the person may have passed, does not lessen the value of their words, to the one that is still seeking the information that was already posted.  Is actually honoring that persons words and effort for having posted. Were we to stop using words and quotes from those that have passed, I believe it would be a very dull world.

If I've spent time finding specific information, and what I feel is of more than casual interest, is it not better to bring such information up to the forums front end, for others to more readily read?

Have in a few instances, included many IHD links, regards related subjects, in the 'brought' forward topic.

If I recall even half correctly, there were at least five/six response posts, saying 'thanks for bringing this old topic back'.
Where this all eventually winds up.......................

http://ihatedialysis.com/forum/index.php?topic=25230.msg406132#msg406132
http://ihatedialysis.com/forum/index.php?topic=4525.25
(added IHD link and added comment)
« Last Edit: March 21, 2016, 08:07:39 AM by talker » Logged

Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
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