I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: F.A.Q. (Frequently Asked Questions) => Topic started by: MattyBoy100 on August 24, 2006, 10:21:57 AM
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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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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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I'm still here! ;)
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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
Owner/Admin
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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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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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...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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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.
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. 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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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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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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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
Owner/Admin
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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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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... 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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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.
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Right on Big Sky, i am with you 110%, now where is my shot of tequila ;)
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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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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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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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i really don't want to know. just like a healthy person doesn't know when they're gonna die.
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We'll die when we're meant to and not before.
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[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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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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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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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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It's all about low expectations by members of the health care team.
I seem to recall words in other threads ... respect ... trust ...
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So many times I was not supposed to live I guess. But I am still here as well. Last summer I spent two weeks in a special room where I was constantly monitored 24/7 and when my dad walked in his face went white. I guess he didn't expect me to look as bad as I did. I couldn't sleep laying down so I was sleeping draped over those food stands they have in hospitals and I had on the strongest of the oxygen masks they had there. I had Pneumonia and Peritonitis and had to do Hemo dialysis which was the only time I got to leave that room.
After all I have been through in my life I have been told I am a fighter and don't give up easily. That's right! I want to live! Even though it is by means of this frickan machine ... but I don't want to think about death.
When my friend Jamie died on Jan 1st of this year it really hit me because he was the exact same age as me and on Hemo dialysis when I went on it. That was an awakening. I never really thought about death like I did that day even though other people in the hospital when I was younger had died. I think it was the fact that he was my age and had the same health as me, that made me realize it could happen to me!
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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.
I concur.
Plus, the "Handbook of Kidney Transplantation" (2001) is outdated. Back then, a KT/V of .8 was acceptable.
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.8? wow! Mine has been 1.4 - 1.7 kt/v lately. Did they just not know as much or their standards were simply lower? I am still learning about hemo :-[
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.8? wow! Mine has been 1.4 - 1.7 kt/v lately. Did they just not know as much or their standards were simply lower? I am still learning about hemo :-[
Standards were lower, the standard was to "Sustain" life NOT have a "Good" life well the best we can while on dialysis. :-[ Plus the machines were improved as were the dialyzors, so they had no choice but to raise the Kt/v.
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It's ridiculous to say that a major medical textbook, the "Handbook of Kidney Transplantation," still being used today as a basis for instruction in medical schools, is somehow "outdated" because of all the fantastic progress there has been in dialysis medicine since it was published in 2001! I was on dialysis from 1996 to 2005 and I didn't see a single change for the better in all the nine years I lived under that treatment, nor did I notice any major changes between 2001 and now that would make a book published in 2001 outdated today. The notion that medicine is making rapid progress is a myth used by the medical profession and Big Pharma to enhance their prestige and to induce people to be willing to pay the huge prices they demand for what are in fact the extremely old remedies they are offering. Unfortunately, the media, always in need of a story about a medical 'breakthrough,' cooperates with this myth, so the general public accepts it, even though the last major disease to be cured, polio, was cured more than half a century ago!
When I started dialysis in 1996 the required Kt/V for patients at my center was 1.6, with a desired value of 2.0.
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Don't worry about Dying...Worry about Living.. Live each day as if it is your last..Fullfill your dreams and desires. Dialysis doesn't stop you from dreaming or fullfilling your dreams. Morbid obesity will pronely kill more people today than those dying from kidney disease. So with that said how many of your nurses are FAT??? :grouphug; Mine looks like a comvention for cows. >:D Not being mean but shit they could control their habits too. :sassy
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It's ridiculous to say that a major medical textbook, the "Handbook of Kidney Transplantation," still being used today as a basis for instruction in medical schools, is somehow "outdated" because of all the fantastic progress there has been in dialysis medicine since it was published in 2001! I was on dialysis from 1996 to 2005 and I didn't see a single change for the better in all the nine years I lived under that treatment, nor did I notice any major changes between 2001 and now that would make a book published in 2001 outdated today. The notion that medicine is making rapid progress is a myth used by the medical profession and Big Pharma to enhance their prestige and to induce people to be willing to pay the huge prices they demand for what are in fact the extremely old remedies they are offering. Unfortunately, the media, always in need of a story about a medical 'breakthrough,' cooperates with this myth, so the general public accepts it, even though the last major disease to be cured, polio, was cured more than half a century ago!
When I started dialysis in 1996 the required Kt/V for patients at my center was 1.6, with a desired value of 2.0.
I agree with you stauffenberg, in that there are some myths about advances in medicine (being perpitrated by the medical profession and with the media blindly cooperating), including some of the the glowing promotions of kidney transplantation.
I remember in 1983 when cyclosporine was touted as the "magic bullet" for kidney transplantation, only later to be found to be toxic to the kidney in some doses.
As far as Kt/v, in the States, .8 was a more common acceptable dose in the mid-1990s.
It's really good that in your country a higher dose was universally adopted by 1996 when you began dialysis. What dialysis machine did you use and what dialyzer were you on?
But the advances in dialysis therapy were not limited to Kt/v, it included a more robust nutritional recommendation as well:
35 Kcal per kg of weight per day, 1.2 grams of protein per kg of weight per day.
As far as "Handbook of Kidney Transplantation,", obviously, a lot in the 2001 edition is not outdated, such as the history and basics of transplantation. But statistics are always updated, whether it is about transplantation or dialysis. I was not referring to the textbook title as being outdated, just the edition. Apparently Professor G. M. Danovitch agrees with me, since he has authored a 2005 edition of the "Handbook of Kidney Transplantation."
You do know that some Nephrologists look at dialysis as just plumbing, which can cloud their judgment on the therapy? Perhaps a better look at dialysis comes from a Nephrologist who deals with dialysis all the time, at the clinic level--the machine and filter level.
May I recommend the major medical textbook, Handbook of Dialysis by John T Daugirdas, Peter G Blake, and Todd S Ing (Paperback - Nov 1, 2006). It's so new, it's not yet available in most places. Or if you prefer: Oxford Handbook of Dialysis (Oxford Handbooks Series) by Jeremy Levy, Julie Morgan, and Edwina Brown (Turtleback - Dec 16, 2004).
And finally, as I'm sure you probably know, polio was not cured, but rather widely prevented with the development of a vaccine by Jonas Salk, et al. With the development of EPO (cir.1987), anemia can be cured.
There have been advances in the overall dialysis therapy since 1985. Between 1996 and 2005, maybe not in your country. Maybe the advances were already in use in your country by then. But that's a different thread. ;)
http://ihatedialysis.com/forum/index.php?topic=1258.0
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I was given just Cyclosporine A in 1981 when I had my Transplant. It was given as A trail drug, my Mum and Dad had to sign for it. It was suppose to be so much better than steroids. The Doctors admitted that they were not sure how much to give me. In the end the Cyclosporine A damaged the Transplanted Kidney.So I had to go on the steroids.
It is now one of those what if? I just had the steroids and not the Cycolsporine A? The Transplant sort of lasted for seven years. Never out of hospital for longer than a couple of months at a time. The last two years were hell for me.
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BOYS - Let's stop the piss'in match. You are both very intelligent and very interesting. We can speak our minds here, but I don't want to see you two get mad at each other over what seems to be apples and red apples.
One difference is when I stood in line to drink Polio Punch it was FREE.
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One difference is when I stood in line to drink Polio Punch it was FREE.
Jonas Salk did not patent the vaccine, so it would be available to the world.
What a wonderful man. :)
PS Rerun: I'm not mad ... I may be crazy, but not mad. :beer1;
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In Christchurch where I am if I want I can dialyse every day for as long as I like so I guess I am quite lucky. However there is a fine line between doing lots of dialysis and having a life and not doing enough and ending up in a hospital bed.
I am only small so I am lucky I can get away with 3 housr every second day on Heamo and still have a good life and time to work and play. :beer1;
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I have only been on hemo for two years but my uncle had alport's syndrome and he was on dialysis for almost 30 years, and that was back when dialysis was first getting started!
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Until the day I die, I'll keep expecting to live forever.
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Reminds me of a quote, Fighter. Might have been R.A.Wilson: I will live forever, or die trying. ;D
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It seems as if it were only a few years ago, when I started dialysis.
I just take it one day at a time.
:beer1;
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True, they say time flies when you are having fun! :grouphug;
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And for almost 25 years, it has been a great ride. A little bumpy at times, but still great!
:beer1;
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Zach, you are amazing -- you must be tough enough to scare a Marine ;D
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Zach, you are amazing -- you must be tough enough to scare a Marine ;D
*BLUSH*
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You guys who have done this longer than I have give me hope for a future. Thank you! :wine;
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And for almost 25 years, it has been a great ride. A little bumpy at times, but still great!
:beer1;
13 years here, and I'll say one thing, life has been interesting. I have had a wild ride too. Sometimes my "train" jumps the track but then it gets right back on. :thumbup; You are an inspiration Zach! So Zach and I are proof (No transplant, all these years straight dialysis, both of us) that "life expectancy stats" down mean much since everyones situation is different. :thumbup;
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Okay, off topic here, except an analogy on statistics.
They say the average house sells in 120 days. That doesn't mean SHIT to me. My house could sell in 1 day 15 days or 150 days. It sells when it is going to sell and and "average" doesn't mean anything to me.
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They also say average male life expectancy in North America is 78 years. But since, as we all know, averages don't mean anything, that is why everyone saves for 722 years of retirement, because the Bible says Methusela lived 800 years!
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Well, all my life I lived thinking one day it would all be over. Now that I am on dialysis, I hope I last long enough to know Ive done the best I could do for me & all the people I know. Most of all, I will live long enough to know my daughter wont have to depend on anyone for anything, especially love. I trust God put her in my life for a reason, as she is now my reason for living thru this. :twocents;
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Well, all my life I lived thinking one day it would all be over. Now that I am on dialysis, I hope I last long enough to know Ive done the best I could do for me & all the people I know. Most of all, I will live long enough to know my daughter wont have to depend on anyone for anything, especially love. I trust God put her in my life for a reason, as she is now my reason for living thru this. :twocents;
EXACTLY! I have 9 more years to see my son turn 18 and ship him off to college. GOD gave him to me AFTER I started dialysis, all I ask is that GOD let me FINISH the job he gave me. I LOVE being a DAD, it's the best thing in the WORLD. I ask GOD to keep me alive to spare his grief of losing his father as a youth.
:beer1; Joe Paul.
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Re: life expentance---- Children are my reason to fight for more days here. The children I teach, my 4 children, my 7 grandchildren ( I am not old enough to have 7 grandchildren!!!) -- they are the light of my life. I want to see my youngest get married and see my grandchildren graduate. There is still so much to see in this world and so much more to learn. So I will fight and be grateful for each day -- well maybe not the ones that I am throwing up all day or can't move enough to get out of bed!!! So, I EXPECT to live as long as I can regardless of statistics.
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I had my Dr's appointment today and I told him: "if I die I hope you feel guilty the rest of your life"....and he said to me: Jedi: you know you are gonna die one day, right?....and I said....NO. He looked at me.... Dying is not part of my plans so far....too much stuff to do....I know people in my clinic that have been on dialysis 20 years and still kicking....so I'm aiming for 8, transplant, and the will see....
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So far in the history of the world approximately six billion people have died. In every single case observed so far, the person dying has never been me. Therefore, there is excellent statistical confirmation for the hypothesis that I am immortal.
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So far in the history of the world approximately six billion people have died. In every single case observed so far, the person dying has never been me. Therefore, there is excellent statistical confirmation for the hypothesis that I am immortal.
LMAO
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I need that on a T-shirt!
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So far in the history of the world approximately six billion people have died. In every single case observed so far, the person dying has never been me. Therefore, there is excellent statistical confirmation for the hypothesis that I am immortal.
But only with a transplant. :o
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Can I borrow the quote for T-shirt???
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So far in the history of the world approximately six billion people have died. In every single case observed so far, the person dying has never been me. Therefore, there is excellent statistical confirmation for the hypothesis that I am immortal.
Seriously, Stauffenberg, that's good. I like the way you think!
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So far in the history of the world approximately six billion people have died. In every single case observed so far, the person dying has never been me. Therefore, there is excellent statistical confirmation for the hypothesis that I am immortal.
Stauffenberg. is that your quote or did you read it some where. I would like to put that on a T-shirt. :thumbup;
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That phrase is just my own invention, which came to me one night after studying for a philosophy of science exam. Anyone who wishes to use it is welcome to it.
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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!!!
As a nurse, I would never make this kind of comment, even as a "joke". Yes, the patient you say it to may realize that this is your intention, but obviously it has been bothering you nonetheless; and other patients who overhear it probably don't realize it's supposed to be a "joke". Bad, bad idea.
No, I'm not claiming to be supernurse and I'm not perfect; I'm sure I've said my share of things I shouldn't have. But back to the topic.
Statistics can be very misleading. Since they're derived from large groups of people, they can never be applied to any individual; but too often they are. This is why, for instance, an oncologist (cancer specialist) will usually not answer his patients' questions regarding life expectancy. Say the average for disease X is 10 years after diagnosis; this means that some patients (with very advanced disease that doesn't respond to treatment) may only have a month while another may have a normal life expectancy - simply because he responds welll to treatment, has no comorbidities (other diseases at the same time) or other factors in his favor. But what does the patient hear, even the one with the best prognosis? I have up to 10 years. That's why numbers are just never a good idea.
ESRD statistics have the same problems of course. And more, because therapies have improved greatly in recent years - better dialyzers, machines, meds (EPO!), better transplant meds, better knowledge in general. So statistics derived from patients years ago will not be valid today. Then add to that all the other statistical shortcomings (such as individual comorbidities, etc.) and you see why nobody should focus on "survival statistics".
There is much an individual patient can do to maximize the odds even further: treatment compliance (don't miss any treatments; take your meds, including phosphate binders; blood pressure control to minimize the risk of heart attack, stroke and blood vessel damage; fluid restriction compliance to minimize heart and blood vessel damage; and of course diabetes control). And if you smoke, quit. Sorry, I'm a nurse and couldn't help myself. Not trying to preach though! ::)
HTH.
DeLana :grouphug;
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Health Tip: Dialysis Aids Failing Kidneys
Wed Oct 25, 7:02 PM ET
(HealthDay News) -- Dialysis is a common procedure used to treat patients with end-stage kidney failure. At this stage, the kidneys can no longer function by themselves and dialysis is used to rid the body of excess salt, waste and water.
The National Kidney Foundation also says dialysis can regulate vital chemicals in the blood -- such as potassium, sodium and bicarbonate. It can also help control blood pressure.
Dialysis is not a cure for kidney disease. Many people must undergo dialysis for the rest of their lives.
"We do not yet know how long patients on dialysis will live," the foundation says on its Web site. "We think that some dialysis patients may live as long as people without kidney failure."
original post: http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/news/hs535608.jsp
Jeeez - sounds too good to be true.....
~Karol
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They drug some poor old lady in the center today in a flat wheel chair. They had to use the lift to put her in the chair and prop her up. She yelled when they stuck her, so I know she was alive. She sat there for 3 hours trying to lick her lips. No one to get her water or an ice chip. Why in God's name are they keeping her on dialysis. It made me sick.
I put this post here to prove a point. Life expectancy is a case by case basis. That is like trying to ask how long blonds live.
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They drug some poor old lady in the center today in a flat wheel chair. They had to use the lift to put her in the chair and prop her up. She yelled when they stuck her, so I know she was alive. She sat there for 3 hours trying to lick her lips. No one to get her water or an ice chip. Why in God's name are they keeping her on dialysis. It made me sick.
I put this post here to prove a point. Life expectancy is a case by case basis. That is like trying to ask how long blonds live.
Good point. Quality of life is key, not just length.
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My opinion its up to the Almighty God.
Lori/Indiana
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Marvin has been asked before, "How long can you live on dialysis?" (obviously from those who are not up-to-date on dialysis, ESRD, etc.). His standard answer is, "I'm going to live until I die. I mean I'm really going to L I V E until I die!"
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Me too! I am going to LIVE the best life I can. They told me 3 years ago that I would be on dialysis in 6 months----so I changed nephs!
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This is something I always worried about. I always assumed I would die very young I started at 21/22 I figured I would live to 35 barring a major medical event. I am not sure now, I want to be here for my family as long as I can but I want to be real about the situation. I want to start paying for my funeral now so the arrangements will be taken care of (things like this make me want to be conservative with my life expectancy and plan ahead). I try to communicate my feelings to those I love and I have tried to teach my teenage daughter all I know.
I do not know what will happen but while I am here I will enjoy life, be happy, have fun and do all these thing with my friends and family :bandance;
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Does it really matter how long we live? If you wakeup tomorrow it's a good day! If not so be it. I don't worry about dying. I just enjoy everyday now. Never Weaken!!
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Does it really matter how long we live? If you wakeup tomorrow it's a good day! If not so be it. I don't worry about dying. I just enjoy everyday now. Never Weaken!!
I think that's a great philosophy and we should all try to remember it. Thanks. :thumbup;
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Came across this thread and I have a question?
Which has a longer mortality rate Hemo or PD?
Does anybody know the longest anyone been on PD?
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Kitkatz - is this the thread you were looking for?
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These mortality rates are so skewed that it isn't even funny. There are too many other factors involved such as other health problems. A dialysis patient like me is probably going to live longer than one with diabetes and heart problems that doesn't drink moonshine or take steroids.
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These mortality rates are so skewed that it isn't even funny. There are too many other factors involved such as other health problems. A dialysis patient like me is probably going to live longer than one with diabetes and heart problems that doesn't drink moonshine or take steroids.
:beer1;
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I figure my time is in God's hands.
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I was looking for the tread that had the graph of the dialysis patients lifespan over time. My daughter could use the graph for her presentation in a week.
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It's in "lifespan", 2nd page of Dialysis: General Discussion
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Could you link me to it, please!
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It's in "lifespan", 2nd page of Dialysis: General Discussion
Here's the thread, I didn't find the graph but have a look http://ihatedialysis.com/forum/index.php?topic=4730.0
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As my Wife (the one on Dialysis) would say " I am too busy getting on with life to worry about the end of it" just about says it all don't you think?
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The whole propaganda about 'live just one day at a time' and 'don't worry about how long you have to live' just doesn't make sense in terms of the way people rather than animals live their lives. Because we have a consciousness that looks not only to the present but also to the past and future, we are living in all three dimensions at once, so 'life' at any given moment for us includes what we can expect to have enough time to do in the future. If you could really just live one moment at a time and enjoy a meaningful life that way, then you could have as much fun in the last hour while you were awaiting your turn to be called to the electric chair as you could on a long summer afternoon when you were 8 years old and didn't have a care in the world.
A good example to clarify the error of supposing that you can enjoy just one day at a time without thinking of what your future holds is this: If someone could offer you the chance to have a billion dollars in the bank, perfect health, a perfect lifemate, loving children, and fame, but with the catch that you would also have to be 98 years old to enjoy these benefits, no one would accept the offer. Why? Because your future life expectancy casts its shadow over every present moment you live and can utterly ruin every moment if you know it is too short to give your present projects any meaningful context.
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Worry never robs tomorrow of its sorrow, it only saps today of its joy. ~ Leo Buscaglia
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If someone could offer you the chance to have a billion dollars in the bank, perfect health, a perfect lifemate, loving children, and fame, but with the catch that you would also have to be 98 years old to enjoy these benefits, no one would accept the offer.
Perfect health at 98? What's not to like?
I believe many people would accept this offer.
And with a billion dollars to leave a perfect lifemate and loving children, why not accept?
8)
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I'm with you Zach. :clap;
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My future life expectancy has never cast its shadow over my present and many so-called meaningful projects of other people are in fact quite irrelevant in my eyes. Climbing the corporate ladder is but one example and I mean no disrespect to anyone for whom that is the ultimate in meaning. Au contraire, the awareness that I might die younger than I might have under different circumstances has made the present by far the most important dimension for me. As human beings we can get quite silly with an exaggerated sense of our own importance ( I think of my younger self so earnest about my academic pursuits that I sacrificed a few things that I shouldn't have) and the reality of our own relative insignificance in the world is truly humbling when we put it into the larger context.
Living one day at a time may not work for some, but for those who manage it there can be satisfaction, meaning and joy.
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I figure I had no real idea what my life expantcy really was before I got sick...I know it was very limited with two cancerous kidnesy...so whatever I get while on dialysis is OK by me. Though it does get tiresome hearing how dialysis won't kill me, but it's hell on my heart and that might give. Grrreat...thanks...
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Ah. The last few job interviews I have gone on included the question, "Where do you see yourself in 5 years?" I'm sure I'm supposed to say something to the effect "Working for you..." But I really can't resist being honest and saying, " My life expectancy is less than 5 years, so I don't see myself working here." hehehe. For some reason, I don't ever get these jobs! hehehe They don't realize that because I'm probably not going to be hanging around this world indefinitely, that if they employed me, I'm going to roll up my sleeves and do a blazingly fast, remarkable job-- because time is short.
I did the calculations when I first started dialysis, and they are my guiding force. I set my goals by those calculations...I compel others to get on the ball, by sharing that calculation with them. It would be super if there are treatments for my FSGS that would extend my life, but for now, my eye is on the prize of doing as much as I can for my family, and the world, in the probable time I have left.
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My Marvin (now a 13-year-and-2-month dialysis patient) has several answers about his life expectancy when people ask him how long he can live on dialysis.
Sometimes he says, "I'm going to live -- and really LIVE -- until I die."
Other times, he says, "I intend to live forever -- and so far, so good."
We live in the "today," and we enjoy each day (and have a very meaningful, happy, full "today" every day). We also make plans for tomorrow, next week, next year, ten years from now, etc.
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I think the old "cliche" to live in the moment can be very useful and I try my best to abide by it.
However, I would be in complete denial if I tried to say my health problems weren't always
weighing on me. Most of the time I manage to push it underground into my subconsous, but it is always playing
in the back of my mind. I know my life has been cut short dramatically because of kidney disease. It's a difficult
fact to live with and one that others with no health problems could never understand. I always find things to
look forward to in the future many months down the road, otherwise life would really be tedious. So for me,
living just in the moment isn't enough. With the shortened life-span I have, I've got to think of all those people,
places, and things I want to see.
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I don't see my life span being shortened by dialysis more so than any other factors. There is one lady who posts on Davita that has been on dialysis for 38 years. Since I don't have any other medical issues, I can see myself living for a long time on dialysis.
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Hubby doesn't have any other medical issues other than kidney failure either. Life goes on . He may never die from kidney disease/dialysis. We are living life and making plans like we always have!! Life is too short tpo spend time thinking about dying and how long we have left in this world!!
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I agree with Sunny. You have to realize what is going on, deal with it, but I also look at it as a wake up call. So I really am focusing on enjoying life and thinking of what I would like to do that I haven't done or seen. I have been extremely busy my whole life working, mothering, volunteering,etc and didn't take time to accomplish some things I wanted to do. So I am a little more selfish now and my family not only accepts it, they push me to do and plan more. One son wants me to train with him for a marathon----no way! --but he sees me as someone who can do anything now and I like that. My oldest daughter wants her two little ones to spend as much time with me as possible. Not because I am going to die tomorrow, but she realizes time is precious, no matter how much we have. Two years ago, I didn't think this way. I was writing my will, planning my last wishes------I don't have time for that now! There is Chicago and Vegas to plan for!! :2thumbsup;
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Could you link me to it, please!
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/dialysis-lifesp.html
This post includes a table from the USRDS
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Started on Hemo at the age of ten 1977, had transplant 81, last till 88 been on dialysis ever since. Can not take one day at a time. To many bloody bills to pay, thing to do. :boxing;
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Didnt realize how scared i was til i pondered the life expectancy question just now. Makes me wish i still had my xanax, then i wouldnt give a shit. sleep will be difficult tonight.
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For me, the idea of living one day at a time does not mean that one doesn't make plans or do things like work etc. It simply means being really attentive to the present as if that were all there is. This "cliche" (the saying is a cliche, the philosophy behind it isn't) is central to much of buddhist thought, the notion that we need to be here now,to be truly present in the present and is as valid for people with illness as it is for everyone. The hard part for me about this is that sometimes the present is not fun, it's tough times or painful or sad. But these times need to be acknowledged and even honoured too. When I'm dealing with feelings I'd prefer to sweep away I get through them better if I allow myself to feel them not push them down inside myself or ignore them until they get stronger and take over. I'm not saying this is always entirely possible and it's not about dwelling on things either but for me one step at a time and trying to pay more attention to the present is helpful.
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Since I don't have any other medical issues, I can see myself living for a long time on dialysis.
:beer1;
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Good for you monrein. :grouphug; I guess the real title should be, Life expectancy without dialysis.
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When we were in our 40s my husband had angina. We loved wilderness camping. Everyone said "How can you go into the woods when he may have a heart attack at any time?" We worried about it for a while and then decided that we could continue doing what we love or sit home and wait for the heart attack. Wilderness camping won. He is now 74 and on dialysis and has never had a heart attack but did have a bypass. We had 30 years of doing what we loved. Now we can't go wilderness camping anymore but we still have a life and can do many other things. We can still go to the wilderness but we stay in a cabin now and take day trips.
Found this article that shows if you become involved in your care your survival chances go up.
The mortality rate during the first 90 days of dialysis is estimated to be at least 25%. The study by Wingard et al. noted that hemodialysis patients selected for an early program of intervention and education (RightStart) had a better survival rate at 3 months, 6 months and 12 months and fewer days in hospital than did individuals who received 'usual care'. A 45% reduction in the risk of death during the first year of dialysis in patients without diabetes was noted in the RightStart cohort compared with the control group.
More information can be read here: http://www.healthcentral.com/incontinence/news-193196-66.html
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You're my kind of person, Roadrunner. I still love wilderness camping and don't think dialysis will ever stop me from doing it.
I strongly disagree with the mortality rates. My center is private and nonprofit and the death rate is extremely low. The for profit centers like Davita and Fresenius have a much higher rate. Home hemo, either daily or nocturnal, is about as good as a transplant.
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Roadrunner, you and your husband sound like Marvin and me. We have always been involved in Dixie Youth Baseball (which is similar to Little League) and have now coached for 23 years -- Marvin with the "older" ones (ages 9-11) and me with the "little" ones (ages 6-8). Even though we don't have any children, we have actually helped "raise" many children in our community. When he first went on dialysis, all of our family was sad for Marvin because he would have to give up his volunteer coaching -- or so they thought. Marvin decided he wouldn't do that. (His words -- "If I die out on that field, I'll die doing something I love, which is better than dying sitting in my recliner at the house!") Since he's been on dialysis, he's coached for an extra 13 years and also had his teams advance all the way to four STATE tournaments (and his team was runners-up in the state of NC two years in a row). If he had "retired" from his volunteer coaching when he first went on dialysis, he would have missed working with about 650 little boys and girls -- and they wouldn't have had the opportunity to play for him. Now, don't get me wrong -- he can't coach exactly like he did before he got sick; he's had to make some adjustments because of his physical limitations. But, he's still coaching...still loving it...still good at it...still going.
Home hemo, either daily or nocturnal, is about as good as a transplant.
Flip -- I know you made this statement referring to mortality rates, but we think it's also applicable for energy, stamina, overall health, etc., too. Marvin feels just about as good now (home hemo) as he did when he had his transplant, and his labs are just as good as during his transplant. But, we're still hoping for another transplant.......
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The problem always is that there is one lab value which is never the same on dialysis as with a successful transplant, and that is the creatinine level. Even right after hemodialysis sessions patients are often going home with a creatinine of 300+, but with a successful transplant, the creatinine will range between 80 and 130 all the time. Since it was demonstrated in 1995 that creatinine is toxic, causing accelerated athero- and arteriosclerosis, an elevated level will always pull down the life expectancy.
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Since it was demonstrated in 1995 that creatinine is toxic, causing accelerated athero- and arteriosclerosis, an elevated level will always pull down the life expectancy.
Is it not true that some of the immunosuppressive drugs taken after transplants also cause accelerated athero- and arteriosclerosis?
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Quite right! But my point only was that patients shouldn't assume that just because their nephrologists tell them their lab results are 'okay' that this means they are normal. It just means that the small subset of the total blood chemisty selected for measurement to determine the adequacy of the dialysis dose is within a tolerable range.
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The problem always is that there is one lab value which is never the same on dialysis as with a successful transplant, and that is the creatinine level. Even right after hemodialysis sessions patients are often going home with a creatinine of 300+, but with a successful transplant, the creatinine will range between 80 and 130 all the time. Since it was demonstrated in 1995 that creatinine is toxic, causing accelerated athero- and arteriosclerosis, an elevated level will always pull down the life expectancy.
When I had my transplant my creatnine never went below 1.7. It usually hovered around 1.8 and 2.2.
Donna
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Physiologic values for a normal, healthy kidney or a well-functioning transplant on the scale you are using would range from a creatinine level of 0.7 to 1.3.
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Physiologic values for a normal, healthy kidney or a well-functioning transplant on the scale you are using would range from a creatinine level of 0.7 to 1.3.
"Normal" varies by gender and age too. More important is the trend over time. Even somewhat diminished function (Levels in the 2s) if stable, are acceptable.
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Creatinine is TOXIC. Anything higher than the normal range of 0.7 to 1.3 may be classified as 'acceptable' in the world of dialysis where it is a given that good health outcomes are impossible, but 'acceptable' is not equivalent to 'healthy,' as the vastly foreshortened life expectancy of dialysis patients demonstrates.
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Creatinine is TOXIC. Anything higher than the normal range of 0.7 to 1.3 may be classified as 'acceptable' in the world of dialysis where it is a given that good health outcomes are impossible, but 'acceptable' is not equivalent to 'healthy,' as the vastly foreshortened life expectancy of dialysis patients demonstrates.
People live a long time - nearly a normal life span - with stage 2 CKD, and Stage 3 CKD if their function does not continue to decline.
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I'm not going to worry about it. I will continue to go to dialysis, wear my seatbelt and obey the speed limits, go to the basement when a tornado comes, and not run with scissors. Hopefully, my life will be long and fruitful.
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I wish there were new updates - this article is the most recent I can find that mentions life expectancy.http://ihatedialysis.com/forum/index.php?topic=4536.0 There must be more current info somewhere.
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This isn't exactly what you are looking for Okarol, but it seems important so I thought I'd post it. The article compares survival on daily in-center hemo versus the standard in-center 3x per week protocol. I can download the paper through the university system, so if anyone would like to read the entire article, please let me know. It's so new that it hasn't even been assigned page numbers yet. I bolded the conclusion at the end for emphasis.
Nephrol Dial Transplant (2008) 1 of 7
doi: 10.1093/ndt/gfn210
Short daily haemodialysis: survival in 415 patients treated for 1006 patient-years
Carl M. Kjellstrand1, Umberto Buoncristiani2, George Ting3, Jules Traeger4, Giordina B. Piccoli5,Roula Sibai-Galland6, Bessie Ann Young7 and Christopher R. Blagg7
1Loyola University, Chicago, IL, USA, 2HS Silvestrini, Perugia, Italy, 3El Camino Hospital, Mountain View, CA, USA, 4Claude Bernard University, Lyon, France, 5University Hospital of Turin, Italy, 6AURAL-Lyon, France and 7Northwest Kidney Centers and University of Washington, Seattle, WA, USA
Abstract
Background. Survival statistics for daily haemodialysis are lacking as most centres providing this have treated only a small number of patients for short observation times. We
pooled our 23-year, 1006-patient-year, five-centre experience of 415 patients treated by short daily haemodialysis.
Methods. One hundred and fifty patients were treated in-centre, most because of medical complications and 265 by home or self-care haemodialysis. Patients were on daily
haemodialysis for 29 ± 31 (0–272) months. Forty-two percent had primary and 31% had secondary renal failure. Treatment time was 136 ± 35 min, frequency 5.8 ± 0.5 times/week and weekly stdKt/V 2.7 ± 0.55.
Results. Eighty-five patients (20%) died; 5-year cumulative survival was 68 ± 4.1% and 10-year survival was 42 ± 9%. Age, secondary renal failure and in-centre dialysis were associated with mortality, while gender, frequency of dialysis (5, 6 or 7 per week), continent, country and blood access were not. Survival was compared with matched patients from the USRDS 2005 Data Report using the standardized mortality ratio and cumulative survival curves. Both comparisons showed that the survival of the daily haemodialysis patients was 2–3 times higher and the predicted 50% survival time 2.3–10.9 years longer than that of the matched US haemodialysis patients. Survival of patients dialyzing daily at home was similar to that of age-matched recipients of deceased donor renal transplants.
Conclusions. Survival of patients on short daily haemodialysis was 2–3 times better than that of matched three times weekly haemodialysis patients reported by the USRDS.
USRDS = US Renal Data System
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Does this (Results. Eighty-five patients (20%) died; 5-year cumulative survival was 68 ± 4.1% and 10-year survival was 42 ± 9%. ) mean that 85 patients died before 5 years?
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I'm on a different computer at home and don't have the paper in front of me, but my guess is that, yes, that is what they are saying. It's difficult with these sorts of studies to know exactly what the patient population looks like demographically, economically, etc., so it may be best to look at the results in a comparative way. Overall they found that Daily short hemo is better than the 3x a week schedule. And, they also noted that "Survival of patients dialyzing daily at home was similar to that of age-matched recipients of deceased donor renal transplants."
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Karol,
Bill has written quite a bit about this (see his post earlier in this thread).
Also on the Kjellstrand paper in May of this year. (actually giving Mark's article a plug) http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/more-on-kjellst.html
A lot of people are dissecting this data. It is good news for Dialysis. (home dialysis that is!)
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Bill has written quite a bit about this (see his post earlier in this thread).
Meinuk, thanks for pointing out the earlier posts on the same topic and the same paper. Here's the link Bill posted in May re. the lifespan data in the USRDS:
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/dialysis-lifesp.html
I missed the earlier discussion, which was right around the time my husband was getting his transplant. Well, I seem to miss a lot of stuff here anyway...
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Thanks pelagia and Meinuk - the data looks promising.
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If you look closely at the studies done showing the life expectancy benefits with short daily dialysis they are based on inferences from EXTREMELY SHORT TIME SPANS, and since death rates expand exponentially as a function of time spent on dialysis, I think it is a statistically bold inference to project these results over the long term. The decisive limiting factor to the life expectancy of patients on short daily dialysis is going to be death from lack of vascular access, which kills 15% of dialysis patients, but which has not even been taken into account in the studies showing the benefits of short daily dialysis, since it is a cause of mortality which only becomes measurable after a number of years have been spent on dialysis.
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True Stauffenburg, the data and treatment is so new that there is no long term study.
I agree with your citing vascular data, although, you should point out that you are quoting data that was gathered on overall vascular system health of subjects who were relegated to 3x a week minimum dosage, at maximum stress (flowrate). No wonder their circulatory systems failed after all of that stress.
I bet that when Jonas Salk announced the Polio vaccine, you would have questioned him, and denounced him for not having any long term studies before he went public with the vaccine. It is just in your personality.
I am taking these numbers as an early sign that there is a brighter future in short daily and nocturnal dialysis. The trend is positive, and growing, wait a few years, and you'll have all the empirical data you'll need.
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yeah meinuk, also, vascular access failure due to so many different some uncaring people/professionals.
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The decisive limiting factor to the life expectancy of patients on short daily dialysis is going to be death from lack of vascular access, which kills 15% of dialysis patients, but which has not even been taken into account in the studies showing the benefits of short daily dialysis, since it is a cause of mortality which only becomes measurable after a number of years have been spent on dialysis.
Please give us a link to this statistic.
Are these mainly patients in their 70s and 80s? Newly-diagnosed renal failure without warning? Your numbers often tell the story, but only part of the story. And what about the use of those wonderful Permacaths that you have promoted?
There's more to the statistic of 15% deaths due to lack of vascular access than you are stating (which is no surprise).
8)
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Who really cares about meaningless statistics? Zach is a good example of life expectancy on dialysis. Stauffenberg is just "stirrin' up shit" and I refuse to smell it. I hate dialysis just like everyone else on here but I'm not going to quit living just because someone's statistics tell me that I'm supposed to. Trust me, dear friends, I'm gonna be around for a long long time.
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Exactly flip, which is why we are all here...to outwit those damn stats. I didn't like them in the corp world and I like them even less now. So, let's drink a toast to that. :beer1;
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Zach is my "stat" and hero!
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Zach is my "stat" and hero!
:-*
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I agree. Zach gives me lots of hope. Statistics are just numbers. As I told you guys already, my brother was very ill, blind from diabetes, and for the first few years he was not getting adequate dialysis (twice weekly). Yet he lived for 10 years.
There is no 'list' here and the only choice we have is in-center dialysis.
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Thank you everyone. We're all in it together ... well almost all.
8)
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anyone could get hit by a truck tomorrow...or a baseball bat... :Kit n Stik;..my landlords mother had a relative that was on home hemo for 30 years, years ago and my dau in laws great uncle was also on home hemo 30 years up until 8 years ago........I feel I will go on until my time is up.
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having worked for a time in market research i'm very well aware of how statistics can be maneuvered. i just don't pay much attention to them.
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The author of 100 Things to do Before You Die, just died at age 44 after a fall in his house. It was reported that he got half way thru his list. So, healthy or ill, we need to just live as well as we can. I am trying!
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I was diagnosed with kidney disease at age 9. I grew up thinking I would have a very short life. I never expected to see 30, but here I am at almost 47 years old and not on dialysis yet. While I was expecting to die at any moment, I've out-lived several supposedly healthy high-school classmates. Some died from accidents, others from medical problems that cropped up in their adult years. Ya just never know...
I walk through a cemetary every week. It just happens to be on a walk route I take to get to Starbucks -- I don't go looking for cemetaries to walk through on a regular basis (although I do love cemetaries!). Looking around at the headstones, it occurred to me that no one has the right to reach old age. Those who do are just very fortunate.
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ah, but does anyone know the stats on life expectancy for the full time caregiver?
???
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Don't know Noob, but I am hoping for at least one day more than the person I care for so that I will have always been there for him.
:grouphug;
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Don't know Noob, but I am hoping for at least one day more than the person I care for so that I will have always been there for him.
:grouphug;
:2thumbsup; That's my girl!
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You've also got to remember that there's a large number of dialysis patients that simply don't take care of themselves. This group greatly skews the life expectancy curve. A lot of these people are self-destructive, and unfortunately, they're counted in OUR statistics. I've only been around the dialysis scene for a couple of months now, but it's shocking to me how careless some of these people are with their health. A lot of them don't adhere to any sort of restraint in their food and fluid intake. And those are the good ones.
There's one guy at my center that comes in late for treatments, and always opts to leave early. By not getting a full cleaning, he's drastically shortening his life. There's a woman (who I suspect is a crackhead), who won't stay for treatment if she isn't seated within 15 minutes of getting to the center. And don't forget the guy gets low BP during dialysis because he pops Oxycontin like candy while he's on the machine. He regularly comes to the center higher than a Georgia pine, with dilated pupils and slurred speech. Looks like I did in the 70s. But I digress.
I say, SCREW statistics! Back in 1982, as I was about to get married, a friend of mine told me that I should stay single, because statistically, I had a better than 50% chance of my marriage failing. That didn't stop me from getting married (BTW, my wife and I just celebrated our 28th anniversary). Statistics don't take into account our attitudes, or our desire to live. We all have the right to choose, and I choose to live!
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I appreciate this conversation. It's very easy to try to rationalize or get to a "this is how long I'll live" mentality, but in truth, the better mentality is simply... "Live every day to the fullest."
There are a lot of things that will make a difference on any one's personal life expectancy while on dialysis. But I think a lot of it is very personal.
My husband has been on dialysis for 3 1/2 years now, when he began, he was the "picture" of health... to the unobservant eye. He was tall, strong, working anywhere from 8-14 hour days, on his feet all day. But behind the scenes, he's smoked since he was 14 years old, he had high blood pressure and was slightly over weight.
However, I have to honestly say, in the last 3 1/2 years, I have seen such a rapid and noticeable decline in his health that it's literally frightening. He now appears to be a 48 year old man in the body of a 70 year old.
Yes, dialysis takes it's toll on his body, but also on the mind and emotions. We do the at home dialysis. We are supposed to do it 6 days a week, but I can't tell you how many times he asks 'can we just skip tonight?" ... well.. frankly, no, we can't.
That being said, his health has become a domino effect and not in the right order.
He was not diabetic previously, he is now... and is now insulin dependant.
As a result, he has severe neuropathy in both feet to the point they've got him on multiple medications for it. He's not allowed to cut his own toenails or do anything that might damage his feet.
He still smokes, though he knows it's killing him. He knows even faster being diabetic with kidney failure. They've warned him how it will close his veins, make them tight, possibly lead to amputation of his legs.
He has been hospitalized 7 times in the last 3 1/2 years from anything from an infection that went septic to a pulmonary embolism and thrombosis. He has supraventricular tachycardia and been hospitalized for that as well.
Sleep apnea, parathyroid issues *may require surgery soon to remove*, thyroid issues, chronic lung issues like bronchitis, pneumonia, etc, etc.
So, all that being said, yeah.. he does often feel like a "dead man walking" but at the same time, we don't give up. We are fully aware his life expectancy won't be as long as a friend we know that has been on dialysis 21 years and is always on the go with life.
But, we still do a lot together, even if we do it "slower". We camp, go fishing, enjoy nights out with the kids, run to the coast for a night, etc. Make the memories while you can and do not dwell on the "what if's" or "how long's".
My husband and I will celebrate our 18th wedding anniversary this August, we view every day as a gift and never take it for granted.
Take life, live it and love it. And may you always have enough.
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CM - that's tough to read and I'm sorry you're both in this situation... but.... and I don't want to seem rude or insensitive here, but from what you have written at least some portion of your husband's medical issues and rundown are due to his own decisions - such as smoking for so long and continuing to smoke despite the known and defined risks (yes, I know how hard it is to quit) and skipping D sessions - we'd ALL love to take them off (I even had a weird dream last night where I showed up 2 hours late and had a nurse abusing me because I couldn't get my full dialysis in and why did I show up late and I cracked it and walked out?!?!! and I've NEVER been late for a D session!?!? weird)... but you know we need this stuff to keep us at the best level we can be. Essentially hubby is chosing "quality" of life (in his terms, that means smoking, and freedom from the machine) over quantity - and that's absolutely his right, but I'm sure if he magically stopped smoking, did his 6 sessions a week and started exercising things would improve over time.
Again I read this and it sounds so rude and condescending - and I honestly don't mean it that way - I just think in the context of this topic that while a lot of our life expentancy is based on things we can't control much, there's definitely some of it that is.
I suppose when it comes down to it it's all about what your own personal priorities are. Nobody else (certainly not me, despite the tone of this post) can tell you what they should be or how you should live your life - we're all responsible for our own decisions.
I hope things improve for your hubby.
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A lot of these people are self-destructive, and unfortunately, they're counted in OUR statistics.
My PD nurse told me about some of the crazy things she has seen on her home visits. The worst; picture an episode of hoarders, then imagine that person doing dialysis in the middle of that mess. A different lady had her cat bite threw her pd catheter and didn't bother to call any one until she became septic.
Unfortunately Richard, I think she is very aware of the effect his life style is having on his health. I hope your husband finds away to change the things he needs to change, and I hope he discovers how to enjoy the changes. People are afraid to change because they are afraid of what they will lose. But it's not about what you will lose, it's about all the things you will gain.
I feel for you charmedmist. I made my ex girlfriend go through something similar. I would sneak salt and potassium. Sometimes when she caught me, she would cry and tell me i was killing myself.
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I don't want to seem rude or insensitive here, but from what you have written at least some portion of your husband's medical issues and rundown are due to his own decisions
Oh, trust me, not rude or insensitive at all. I completely and whole heartedly agree. And, I think he knows that, he realizes to some extent.
I have said to him that it feels like a slow suicide when he chooses to not follow the recommendations of the doctors.
At the same time, I can't harp or push or plead or nag. Ultimately, it is his life and his choice. Though it effects us all. (We have three kids at home still.) Yet, whatever happens, this is his body and I can't force him to do the right thing. It is hard watching.
We got some bad news just today.
He had a large blister on his foot pop, we've been treating it as his doctor suggested, but it was turning purple/black on his big toe. I insisted he not wait the "come back in two weeks to see me" the doctor had said and go in again.
He did... the first words out of the doctor's mouth were "You need to see a vascular surgeon."
So, tomorrow, he goes for lab work, on Monday he sees the surgeon. But from what from what the podiatrist said today, it seems highly likely he'll lose at the very least his big toe.
I take no offense, because I agree.
When I see him drinking diet soda's... all I can think of is "What about the sodium? Potassium? Fluids?" I'll mention it to him, but he'll just shrug it off like it's no big deal.
At this rate, I can mention things and pray he hears, but he has to care about himself to take care of himself.
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CM I send you lots of *hugs* because I can't imagine how difficult it is for you, and your kids, and everyone else who cares and loves him to watch your husband treat himself this way. Like you say you can only do so much and pushing and begging will probably just have the opposite effect. I'm no saint when it comes to kidney failure - I allowed myself a small vodka and coke with lunch(plus extra binder!! :) ) so I'm not trying to be on a soapbox, but I can't imagine how hard it is to watch someone make choices that seem so wrong to us.
My best wishes to you and your family - and for the big toe!
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There was a woman at G's dialysis unit who used to add salt to her meals. Her hubby would bring them into the unit so she could have dinner on D, and she would add salt and salt and salt and salt. She didn't like the renal doctor, saying she didn't like being shouted at. "Then don't eat salt!" G would reply... in his imagination.
I yesterday hassled G about drinking diet coke. Gently, I hope, a gentle hassling? This morning he says he dreamed last night he saw a man show him his knee, but his knee was gone. And he lifted up his shirt and showed him his abdomen, but it was all gone. He said, the man had lost his knee and his abdomen to diet coke. [blush] I guess I should back off a bit with the comments.
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Maybe when he loses his toe, he will realize this sh** is real. :grouphug;
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:banghead; Yeah, it often feels like banging your head against the wall.
I think he's taken a bit of a death is near mentality.
A couple weeks ago, he sat down our 13 year old son (our oldest) and explained how he'll have to "step up" to be the man of the family when he's gone. All this happened while I was at work.
When I heard about it, I was upset. You can't put that pressure on a 13 year old who's already dealing with watching dad's heal be bad!
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A couple weeks ago, he sat down our 13 year old son (our oldest) and explained how he'll have to "step up" to be the man of the family when he's gone.
Maybe he's the one who needs to "step up."
Prayers to you and your family.
8)
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I have always believed it is down the the renal patients attitude. Some patients take to dialysis a lot better than other patients. Some just give up without trying, you do need the will power to keep going. I have a little understanding what it must be like for a new patient. This is a little saying that a renal patient said to me when I was starting hemo at the age of ten in l977 "RENAL PATIENTS NEVER GIVE UP!" . It as alway stuck in my mind and helped me through the bad times which all renal patients have.
Remember just keep going you will always get through whatever the doctor/surgeons do to us(the renal patient) :grouphug;
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Well, funny thing.. just today, we found a funny website where he saw a tee shirt that said "Dialysis, damned if you do, dead if you don't." He thought it was so funny, he just had to have it. SO.. .we bought it.
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Well, funny thing.. just today, we found a funny website where he saw a tee shirt that said "Dialysis, damned if you do, dead if you don't." He thought it was so funny, he just had to have it. SO.. .we bought it.
We have that shirt in our cafepress store. Did he get it from us?
http://www.cafepress.com/ihatedialysis
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I guess that taking care of diets and having a good attitude would help somewhat, but dialysis patients have a lot of risks and would die with a much higher rate than the general population, no matter what we will do. The main factor for high mortality rates of dialysis patients is age. Diseases rather than kidney disease would play a very important role for the high mortality rate too. If we exclude most old folks and very sick ones, the annual mortality rate is about 6%-7% for the patients waiting for transplant in the U.S., much lower than the mean value for the all dialysis patients. Taking care of diet is good, but enjoying the life is also important too.
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We have that shirt in our cafepress store. Did he get it from us?
http://www.cafepress.com/ihatedialysis
I know we got it from cafepress, not sure if it was linked to you. But for future ones, I'll go looking.
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We are fully aware his life expectancy won't be as long as a friend we know that has been on dialysis 21 years and is always on the go with life.
But it could be. Don't just write it off!
Charmed, you are in the worst of positions, wanting a loved one to fight for life yet watching him self destruct. You didn't say whether or not your husband ultimately did skip the sessions he's asking to skip, did he? How's his bloodwork? If it is okay, don't worry about what he is eating.
Sleep apnea - treatable, no need to worry if treated.
Parathyroidectomy? If his hyperparathyroidism is not responding to medication, don't procrastinate. Get it done before his bones are affected. This is a significant quality of life issue.
Diabetes, smoking, and limb loss... Here it is, something your husband can influence. As you know, diabetes damages the circulatory system and smoking constricts blood vessels - a 1-2 knockout punch for the extremities. How's his blood sugar control? The body will grow "collateral" blood vessels, enhancing (not restoring to normal)blood flow to areas with damaged vessels, but in the face of smoking and diabetes it is a losing battle. Your husband is facing his first amputation (best of luck with the vascular surgeon). His own actions will influence whether or not the process continues. The greater the loss the greater the impact on his everyday activities.
Dumping that on your 13 year old son is pretty selfish - he needs to think of that 13 year old each time he lights up! If he doesn't care about himself, how about you and the kids?
Depression is a killer and is probably reflected in his self-destructive behavior. I hope finding that t-shirt to be funny marks a turning point of some sort. Best wishes to you and your family, and happy 18th anniversary this August. I wish you both many many more!
Alene
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I've told him he owes me to make it to at least our 25th anniversary. :) Gives him something to shoot for when he's in his "I'm so done with this" attitude.
He does skip the sessions sometimes, but I try to make sure at the very least we get in our 5 days a week.
However, he's ALWAYS had a problem with the fluid retention. He can easily be 5-7... and once even 11 kilos over his limit. With the home machine, we average taking off anywhere from 3 1/2 up to 5. When we do 5, it's a 5 hour session too.
He uses the sleep machine, so that does help.
His parathyroid - not sure exactly at what stage it is, I know even on meds for a long while it kept going up and up. They are talking surgery, but he never gets a definite answer from them of when or what he should do to schedule it.
And I agree about dumping it on the kids being selfish. We have three at home still, ages 13 (boy), 12 (girl) and 11 (boy.) I still work full time as well and we do the dialysis when I get home in the evenings. Life is never dull at our house, but it certainly is repetitive.
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5, 7 and 11 kilos over - and you do nightly (ok, 5/7 nights) dialysis??? That's mind boggling. Does he just not follow ANY restrictions on his diet/fluids? Doesn't sound like it. That's freakin' scary.
I absolutely agree it's so selfish to put it on a 13 year old - a 13 year old who clearly loves and cares about his father, and has to watch this self destruction along with you, be helpless, and then told to "step up"?! geez, what message is that giving? "When it gets all too hard, just give up?" thank you Homer Simpson.
Like Alene said - he has control over some significant aspects of his own situation/treatment - his smoking, his fluids, his diet - I think changes in those areas would significantly improve his overall condition. YES it requires will power and commitment - but it *IS* worth it to make that effort. I look at it as "no pain, no gain" - and I know for me anyway, the gain will be in the future hopefully with a long lasting transplant allowing me more freedom to eat, drink & be merry (and all that). For CM's hubby the gain could well be making it to that 25th anniversary, and beyond, and feeling overall better without the strain of the fluids on the heart, or the effect of severe diabetes and all that.
Reading of situations like this just underline for me how important it is to have that willpower and NOT do the naughty things - no matter how tempting they are.
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PLEASE!
You must some how help your husband stop drinking so much! Over the years I have seen a lot of new renal patients. There is no kind way to say this DIE from being overload with fluid. He must cut down on his drinking! THIS IS A MUST! I do not want to read a post from you to say your husband has died for being overloaded. He needs a wake up call. I have been on dialysis over 20 years now. Only doing 3 x 4 hours weekly. I am still doing long walks, fly fishing, bike riding. Plus much more. Being on dialysis is not the end! look at is as a new challenge! That you and your family need to take on.
Just a few ideas how to cut down drink.
Get smaller cups
Only half a cup of a drink.
If needing a drink have a ice lolly, or ice cubes.
Take small sips of the drink so it lasts longer.
I am sure other patients on this site have more tricks they do to cut down there drinking of fluid.
Plus remember this site is always here for you and your family :grouphug;
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Thank you for your support, it's nice getting to hear it from other patients and not just nurses and doctors.
I do know he needs to make these changes. I am going with him tomorrow to meet with the vascular surgeon about his toe. Good news was the first check on friday showed blood flow to the toes. But last night when I changed the bandaging, the toe is now almost entirely black, it reminds me of a "frost bite" look.
I'd like to go with him next time to the clinic meeting, but I might forego that and just call the social worker privately or nurse and see if they can get through to him again.
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Charmed,
(Please don't see this as "piling on") I am diabetic too. There are many reasons for having good blood sugar control, but there's one additional one for dialysis patients: High blood sugar makes you thirsty. I used to have much more trouble with fluid overloading, but I began focusing on keeping my blood sugar down or rapidly bringing down if I found it high. I actually had to explain to the primary care physician the tie-in to fluid overloading. With that, I was prescribed the rapid acting insulin that I needed and the extra test strips to help stay on top of things.
How is your husband's blood sugar? Is it driving his thirst and, in turn, his fluid overloading?
This is for you :cuddle; . Like Kevno said, RENAL PATIENTS NEVER GIVE UP! There is a reward in controlling what can be controlled. I wanted to see my daughters into adulthood. They were just entering their teens when I started dialysis. That was almost eight years ago. It has been a struggle, and I didn't know how far I could go, but my little girls have graduated high school and gone on to college. One will get her degree in August and one has married and will be making me a grandfather later this year.
Good luck to you with your struggle and you husband in his. In the future I hope to read about your milestones too. These things to look forward to have kept me going.
Epofriend
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Well.... when he bothers to check his blood sugar... they've set a goal of 130 for him. But, when I (just now) asked him what his average was (as he's sitting on his dialysis machine) he said "I haven't really monitored it enough to know." Arg... at least he responded with "I need to start doing that."
One thing I've noticed, can you all fill me in, does dialysis or maybe it's the meds that come with it, make you forgetful, confused, unable to think cognatively? Little things that used to be so easy for him are now difficult. Even things like paying bills properly.
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He may be underdialyzed.
8)
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One thing I've noticed, can you all fill me in, does dialysis or maybe it's the meds that come with it, make you forgetful, confused, unable to think cognatively? Little things that used to be so easy for him are now difficult. Even things like paying bills properly.
Not really dialysis per se, but the kidney disease sure can - it's the buld up of toxins that is doing it - so like Zach says, could be not enough dialysis is affecting things - you did say he skips sessions....
Sometimes I can feel a little fuzzy upstairs, but most of the time I'm still able to add 2 and 2 together and get.. what.. 5? :rofl;
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Ah, interesting. I never thought about that.
Well, I am sure that does have an effect.
The second thing I believe effected it is when he first got sick, he had pneumonia very badly. He was intubated for 9 days due to it and his oxygen level hovered in the 80's. I have honestly wondered if that in itself maybe effected brain cells.
We saw the doctor today regarding his toe. He told us it does have gangrene but as of yet is not a hopeless case. He's checking for blood clots in the leg, which can be caused by a combo of the smoking and diabetes. Not to mention, first time he had his fistula surgery he had a thrombosis and a pulmonary embolism as a result. The doctor said "once you get blood clots, you can be prone to them again." He does take warfarin but he will have to stop taking it for 4 days before the arteriogram. At any rate, we're just "taking it a day at a time" with his foot right now and getting "more information" before they decide to keep it or remove it.
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high blood sugar can affect your memory.
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Well.... when he bothers to check his blood sugar... they've set a goal of 130 for him. But, when I (just now) asked him what his average was (as he's sitting on his dialysis machine) he said "I haven't really monitored it enough to know." Arg... at least he responded with "I need to start doing that."
One thing I've noticed, can you all fill me in, does dialysis or maybe it's the meds that come with it, make you forgetful, confused, unable to think cognatively? Little things that used to be so easy for him are now difficult. Even things like paying bills properly.
It is absolutely essential to tell his nephrologist about this. Since it is about cognition, YOU must pass this information along to his doctor. There are myriad causes for memory loss and losses of mental ability. A physician is probably the best person to sort it out. My wife has had a similar mental deterioration along with her physically catastrophic multiple sclerosis.
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20 years? I'm only 32. Apparently I'm going to be the one who breaks the rules!
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20 years? I'm only 32. Apparently I'm going to be the one who breaks the rules!
There are many people who have made it past 20 years - check this out http://ihatedialysis.com/forum/index.php?topic=9672.0 :bow;
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If 20 years is the average, there will be even more who don't make it.
Here's a thought: only those who make it will know they've beaten the average.
Another — I'm 70, so can expect another 4 years. Should I worry too much about excess phosphate? I'm never likely to bear the consequences of hyperphosphatemia in my lifetime.
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Averages don't mean a whole lot unless adjusted for two important factors: age and comorbidities (other diseases). A patient who starts dialysis at 80 has a shorter life expectancy than one starts at age 50. Same idea if you have congestive heart failure when you start dialysis. Your average life expectancy is shorter because of the CHF.
I'm just short of 60, and I started in January. I have, according to general stats, about 4.5 year life expectancy. Nobody, however, can tell me how long I'll live. The only truth is that I'll live until I die. :clap;
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Wow. I have been on dialysis exactly 8 weeks. About 2-3 weeks ago, my nephrologist, whom I recently went back to, visited me in the clinic during dialysis. At the time, I asked him about the mortality rate on dialysis. He looked at me with a somber, straight face and said, "the average life span on dialysis is three years." So I asked him to sign my disability forms. He said yes.
I sensed as he said it, there was almost a sadistic tone in his voice (I had criticized his practice in the past and he had told me that it affected him very much, so payback?) Nothing surprises me anymore, but I knew he was being very cruel to me. I DO have a rare, progressive form of kidney disease called fibrillary glomeronerphritis. There are so few people with it that statistics are few, but the ones that exist may support his numbers if in fact that is what he meant.
Either way, I have already wished that I would have died when I hesitated a day before going to the ER when my breathing became so shallow I almost saw mist. I went to sleep insted of calling 911 and made a deal with God that night. If I still had a purpose to fulfill, let me wake up and give me the strength. If all I had ahead of me was suffering, let me go and not drag myself and my family through this. I did manage to fall asleep for a straight 6 hours. When I woke, my breathing had improved. I was so, so pissed off. I still went to the ER, and they told me I was ready for dialysis and that I had 2-3 weeks to live without it. We began scheduling emergency access right then and it has been two foggy, horrible months since.
Compared to how I felt that night, I feel remarkably better. People don't understand, that doesn't mean I am like them. I still have tubes sticking out of my chest that are attached to my heart (shoiuld be out in another month - can't wait to take a long, hot bath and to swim before summer is over. Ah, the little things). My activities are extremely limited. My mind, well, its all over the place. But, I also believe that, when it is my time, that will be it, whether it be three years or thirty.
Ironically, I was a financial analyst for over 20 years, so numbers are familiar to me. And in this case, they mean little. Let's just say this wouldn't be the first time I've beaten the odds. Besides, along with the grim statistic, my doctor added the truth, that he really knew nothing.
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Life expectancy does vary for each individual patient depending on other diseases such as heart failure or uncontrolled numbers.
I do know the last data I was told stated at the 10 year mark approximately 70% of dialysis patients have pass.
Dialysis patients are also more likely to pass on a Monday/Tuesday due to their two days in a row without treatment.
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I don't look at what any doctor says or the data. I was told by one of my doctors that I mite live 5 years on PD, if I was lucky... I was 16 at the time and it was a depressing feeling that I mite not see my 22 birthday. I decided that I was going to beat those odds and that I was not going let anyone one tell me my life expediency. I just say that your timeline for me and now let me show you mine. I have been on D now for 15 years and still going strong. I try not to look at the I can't dos in my life and look at well I can do this. Stay positive and have a good sense of humor about life.
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I don't look at what any doctor says or the data. I was told by one of my doctors that I mite live 5 years on PD, if I was lucky... I was 16 at the time and it was a depressing feeling that I mite not see my 22 birthday. I decided that I was going to beat those odds and that I was not going let anyone one tell me my life expediency. I just say that your timeline for me and now let me show you mine. I have been on D now for 15 years and still going strong. I try not to look at the I can't dos in my life and look at well I can do this. Stay positive and have a good sense of humor about life.
Your so right!!!
Keep :boxing; & stay positive, good things will come :)
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It wouldnt bother me to have a longer time. Not like the day isnt about shot anyway when going to dialysis. ;)
You're right there. As long as I feel OK the other 4 days of the week I can cope. Yes we are dead men walking but we are walking even on dialysis days. Don't let them grind you under I say.
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You won't know how in'line with the statistics you are until you die and then once you are dead you won't know anyway.
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My internal med doctor looks at me and says I am beating the odds. Fourteen years on dialysis.
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A doctor once told me I would probably not live to see past 45 years old, and at 25 that is a scary thing to think about. Thinking your life is more than half over... but I will not give up. I will not put stock into something the doctors don't know for sure. I have made it this far, having kidney problems since birth. There has been many times I wanted to just give up, stop going to dialysis, stop taking my meds, but I can't. I'm not a quitter, never have been. I don't intend to start now. I am not a religious person by any means, but I have faith in myself and advancing technology. I believe something amazing will happen in my lifetime that will revolutionize the way we see ESRD and dialysis.
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I knew at 13 that I wasn't supposed to make it to 53 or so, according to the stats at the time for newly diagnosed juvenile diabetics. Damn, that seemed really far away then! Not so much now at 42. A 53 year old man then was ANCIENT. Now I see a 53 year old guy and think, "Gee, he's cute; is he single?"
But hey, I'm supposed to have died from my transplant complications at least twice. So I just tell everyone I think I look good for being a member of the walking dead. ;D I plan to keep on doing my zombie walk until someone finally chops my head off....
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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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I am with JBeany, part of the zombie walking dead.
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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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I'm still here 24 years on with dialysis and deceased donor transplant.
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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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As one of my teachers used to say; there are lies, damned lies, and statistics.
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I started Dialysis on April 28, 2010. Still going strong and still hating it! :rofl;
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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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^
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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... 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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... 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)
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... 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
(added IHD link and added comment)
To talker: I wish you good luck in your indulgences ... but I shall continue to keep our of it because I still believe it is in very bad taste...
Kristina.
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P.S.
... The absence of many IHD-members from years ago actually proves very clearly,
how very precarious life on dialysis is and how very difficult survival on dialysis can become ...
... and that again puts the "resurrection" of this thread in a very bad taste...
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You both raise valid points.
As I see it the primary question maybe of what value will the thread present to the current membership AND those other persons that visit IHD seeking answers.
Recently there have been a few posts by persons struggling with the decision of whether to begin Dialysis or forego treatment.
You both have to agree that is a very difficult and very personal decision that every individual must make for themselves.
Any and all information relative needs to be available, whether it is a current topic or easily searchable. Talker pointed out searches are not always so easy, very word dependent, if you do not use the correct words AND in the correct order, a search may not produce results. I see this most every day using Google.
To use the words of another dead guy, "You cannot please all the people all the time....'
At least we are all civil enough that we can respectfully agree to disagree, and move on.
Take Care,
Charlie B53
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Talker pointed out searches are not always so easy, very word dependent, if you do not use the correct words AND in the correct order, a search may not produce results. I see this most every day using Google.
... I am sorry, but I have to strongly disagree again, because anyone in ESRF who really wants to do some serious research, can easily do so ...
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If you are curious about your chances there is a app from Emory University that calculates your survival odds for one or three years. I have only shown this to one of my fellow patients and I only showed him because his wife wanted him to get on the transplant list and he didn't want to. When he saw how much better the odds were for transplants he got on the list. Just got transplanted. The important thing is to be as complient as possible. Excess fluid gains and foods that are not good put a additional stress on your body. Yes you can die sooner if you are on dialysis but you may not since I have no control of this I ignore it. The only notice I take of the odds is while my wife has survivor Benifits on my pension I don't have them on hers.
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And we must remember, numbers are not people.
For me, it is my life outside of hemodialysis that keeps me going.
Each of us can find our own way to continue to make life interesting.
Regards,
--Zach
:beer1;
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And we must remember, numbers are not people.
For me, it is my life outside of hemodialysis that keeps me going.
Each of us can find our own way to continue to make life interesting.
Regards,
--Zach
:beer1;
Thank you Michael Murphy for your kind thoughts and thank you Zach for saying that numbers are not people ...
What may also count is what we make of our life despite these health-issues ... and how much we let these health-issues "get at us" ...
or, how much we let these circumstances not "get at us" ...
As Nazim Hikmet once said: ... To be captured is beside the point : the point is not to surrender...
Thanks again from Kristina. :grouphug;
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..............................
What may also count is what we make of our life despite these health-issues ... and how much we let these health-issues "get at us" ...
or, how much we let these circumstances not "get at us" ...
As Nazim Hikmet once said: ... To be captured is beside the point : the point is not to surrender...
............................
All very wise words that should be very well displayed so many people will noticed and take heed.
As a Child growing up there was a Girl abit older than I right next door. I don't recall the affliction that Jill had, but it was very debilitating and she could not attend school. And it was widely know that she was not expected to reach adulthood as this affliction was 100% fatal.
Jill had the determination that she WAS going to finish school. The School and all the Teachers would take the time to write their lectures, take notes of all classroom sessions and proved these to Jill for study. Jill finshed Grade School and also finished High School with excellent grades. Jill applied and was accepted to College. Staff there did much the same as the other schools and Jill did very well in maintaining a very high Grade Point Average.
Being so young I do not remember if Jill Graduated College, All I remember is the sadness of the whole neighborhood at her passing.
Jill knew from early on that she was going to die, but she had the determination that before she died that she would complete her education just as if she were 'normal'.
Jill never surrendered.
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I, for one, appreciate the resurrection of these old threads. i am relatively new to IHD, and even if the search function was stupendously good, I wouldn't know to even look for these topics buried here. I do NOT consider it in "bad taste" at all. It is historical information. And it helps me to know some of the longer-term denizens of this forum better.
I'm in no denial that my life is likely to be shortened because I have this disease. Any comfort it might bring me to pretend it's not gonna happen is only a pretense. I'd rather have my eyes open. Most knowledge is s good thing.
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I, for one, appreciate the resurrection of these old threads. i am relatively new to IHD, and even if the search function was stupendously good, I wouldn't know to even look for these topics buried here. I do NOT consider it in "bad taste" at all. It is historical information. And it helps me to know some of the longer-term denizens of this forum better.
I'm in no denial that my life is likely to be shortened because I have this disease. Any comfort it might bring me to pretend it's not gonna happen is only a pretense. I'd rather have my eyes open. Most knowledge is s good thing.
Thank you kickingandscreamin for your well expressed thoughts here, regards the reviving of old, buried threads.
Yes, I did read through many old threads.
Did believe what I was doing would /could benefit others. In that I saw merit in the doing, I took the time to bring them back to life.
My efforts though, was not to the liking of one person, and led to some unkind words being said by that person.
I truly wish that person wellness.
Am I thin skinned, not at all.
With out going into detail, 'If I have to tip-toe through the tulips while posting, I much prefer to NOT post at all.'
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..............................
What may also count is what we make of our life despite these health-issues ... and how much we let these health-issues "get at us" ...
or, how much we let these circumstances not "get at us" ...
As Nazim Hikmet once said: ... To be captured is beside the point : the point is not to surrender...
............................
All very wise words that should be very well displayed so many people will noticed and take heed.
As a Child growing up there was a Girl abit older than I right next door. I don't recall the affliction that Jill had, but it was very debilitating and she could not attend school. And it was widely know that she was not expected to reach adulthood as this affliction was 100% fatal.
Jill had the determination that she WAS going to finish school. The School and all the Teachers would take the time to write their lectures, take notes of all classroom sessions and proved these to Jill for study. Jill finshed Grade School and also finished High School with excellent grades. Jill applied and was accepted to College. Staff there did much the same as the other schools and Jill did very well in maintaining a very high Grade Point Average.
Being so young I do not remember if Jill Graduated College, All I remember is the sadness of the whole neighborhood at her passing.
Jill knew from early on that she was going to die, but she had the determination that before she died that she would complete her education just as if she were 'normal'.
Jill never surrendered.
Many thanks Charlie for mentioning Jill's story and her great determination!
Her story is very similar to ours in our ESRF, as we also know that we might die much earlier than many healthy people of similar age, but at the same time we are also given the chance to either make something out of our life - despite our ESRF - or "just give up" ... the choice is ours ...
Many thanks again for mentioning Jill's story from Kristina. :grouphug;
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And we must remember, numbers are not people.
For me, it is my life outside of hemodialysis that keeps me going.
Each of us can find our own way to continue to make life interesting.
Regards,
--Zach
:beer1;
:-*
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I had no idea I was in kidney failure when I was diagnosed with Stage 5 at 54 years old.. I went through reading everything on the internet I could and kept seeing numbers. 4 years, 12 years, 20 years survival rates and life expectancy. So I decided I could not live on a clicking clock. I would take control of my own health and care much as I could and squeeze out as much life as possible. I am lucky enough to be in home PD and making the most of everything I can. Like everyone else I have good days and bad days but I have days and that is what really counts. Be proactive, mind over matter can count sometimes.
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I had a major heart attack 18 months ago that has largely constrained any physical activity, my life expectancy is not that great. This seems to bother every one but me. While I was listening to the doctors my first night after the heart attack I heard that I was not expected to make it through the night, I took two things from that, if you easedrop on private conversations you may not like what you hear, and two it’s not the quantity of years but the quality of the years you have left. Without Dialysys I would be dead many years now so anyway you look at it I am in my bonus years. I am still enjoying my time left with luck I have more to come, my first heart attack was in 2008 second in 2016,so I figure 6 more years.
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You know what they say - it isn't the length, it's the width. A wide life, taking all each day offers, pushing the edges. How far can you take it today, going side to side?