Life expectancy on dialysis.

[Zach]

It's all about low expectations by members of the health care team.

I seem to recall words in other threads ... respect ... trust ...

[angieskidney]

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!

[Zach]

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.

[angieskidney]

.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

[Epoman]

.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.

[stauffenberg]

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.

[redheadedangel]

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??? Mine looks like a comvention for cows.  Not being mean but shit they could control their habits too. :sassy

[Zach]

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

[kevno]

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.

[Rerun]

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.

[Zach]

   
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.     

[15yearstolong]

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. 

[Budman]

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!

[Fighter]

Until the day I die, I'll keep expecting to live forever.

[Oc]

Reminds me of a quote, Fighter.  Might have been R.A.Wilson:  I will live forever, or die trying.   

[Zach]

It seems as if it were only a few years ago, when I started dialysis.
I just take it one day at a time.

 

[kitkatz]

True, they say time flies when you are having fun!

[Zach]

And for almost 25 years, it has been a great ride.  A little bumpy at times, but still great!
 

[Black]

Zach, you are amazing -- you must be tough enough to scare a Marine

[Zach]

Zach, you are amazing -- you must be tough enough to scare a Marine

*BLUSH*

[kitkatz]

You guys who have done this longer than I have give me hope for a future.  Thank you!

[Epoman]

And for almost 25 years, it has been a great ride.  A little bumpy at times, but still great!
 

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.  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. 

[Rerun]

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.

[stauffenberg]

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!

[Joe Paul]

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.