Expected dialysis lifespan: How long does someone live who is on dialysis?

By Bill Peckham

What is the expected lifespan of someone who needs dialysis? This is a recurring topic on the discussion boards, listservs and blogs. I also see it is a frequent Google search. DSEN is one of the top Google results for a variety of ways to ask the question: How long will I live?

Will I live? is often the first question a person has when hearing that dialysis is in their future. One Two things to know - you can live a long time on dialysis; do not max out your credit cards.

Remember when looking at statistics that averages are made of extremes. If five patients live two years and one patient lives twenty years, the average life span would be five years. This is called a bimodal distribution and really the average has little meaning to either group.

Keep in mind when you are looking at these numbers, that they are a blend of at least two averages. The average life span of dialyzors who do follow their exercise, diet and treatment prescriptions, and the average life span of dialyzors who do not follow their exercise, diet and treatment prescriptions. (Exercise: movement to the extent possible; Diet: whatever you have to do to have good lab reports and avoid excessive fluid removal each treatment; Treatment: showing up and staying on for the duration dialysis, and taking prescribed medications properly.)

The United States Renal Data System tracks dialysis mortality rates and issues the USRDS Annual Report there you'll find Section 6 Morbidity & Mortality (PDF link) this is where you'll find the relevant averages for your age and gender.

The report is updated every year; for 2007 the relevant table is: Table 6d  Expected remaining lifetimes (years) of the U.S. population & of dialysis & transplant patients, by age, gender, & race. As you look for the relevant age group remember, averages are made of extremes and that this is all based on the assumption that the treatment is incenter, 3 days a week. There are much better dialysis alternatives.

More frequent and/or longer dialysis has a significant positive impact on mortality. Dialyzing every night, over night, as I do, improves your expected mortality to the point that it rivals having a kidney transplant from a deceased donor. Keep in mind too that these numbers are based on historic results; because of constant improvements in drugs and treatment, no one knows how long someone starting dialysis today can expect to live. No one knows how long you, a unique individual, will live.

If you've just heard about dialysis go ahead and look at the statistics, but know there is a lot you can do to stay right of average. For the rest of the story checkout these nonprofit, independent, educational websites: Kidney School, Nocturnal Home Haemodialysis and Home Dialysis Central. You'll learn that with the proper dose, dialysis works well and you can live a life very similar to the one you were meant to live but for severe chronic kidney disease.

Comments

[Zach]

I have maxed out my credit cards.

Now what?

--Zach

[Bill Peckham]

I should have mentioned that this advice does not apply to film makers.

[TinaMarie]

So if iam on the machine at night my life spam could be longer because I'm using it as the way my Kidneys would have been doing in the first place and because i'm still like to think i'm young i have a higher chance to live longer is that what i'm getting from this. I'm not on the Hemo I'm on the Pd Machine that runs all not long.

[Bill Peckham]

I'm not fully versed in PD but I think you're right Tina Marie - people who dialyze at home - hemo or PD - do better. If you ever needed to switch from PD I hope your home experience will have you prepared to continue at home on hemo.

Today's">http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/peritoneal-di-1.html">Today's post links to the Home Dialysis Central topic of the month that's all about PD.

[Concerned]

How long can someone live on dialysis when their kidneys and liver are 10% functional?

[Tracy Velasquez]

My mother-in-law has just been told that she will need dialysis. She lives with us. She is 76 years old with diabetes. I have been reading about dialysis and it seems to me like the dialysis done at home is a better solution. She told me that in order to do dialysis at home she would need someone with her at all times. My husband and I both work and our children who are still at home are in school. Is it possible for her to learn to do this form of dialysis alone? Why was she not encouraged to go this route? As you can tell we are new to all of this. Is her life expectancy shortened because of the dialysis? That may be a stupid question.

[somerville]

If it were discovered that patients could reduce their risk of having a second stroke by 10% if they spent the rest of their lives walking on their hands rather than on their feet, should this fill the new stroke patient with optimism that the statistics were 10% better than he had first thought? No, because the functional significance of any therapy is determined by what most patients can achieve, not by what the most compliant patients could achieve, and few people could tolerate walking on their hands for the rest of their life, whatever the benefits. The same is true of dialysis: the theoretical ideal is not the real, especially when the ideal depends on factors outside of the patient's control, such as the availability of home hemodialysis programs.

[Zach]

I am real. :)

[Anna Bennett Meinuk@aol.com]

I'll attest to that. I've had dinner with Zach. He is alive and well, and real after 28 years on in-center hemo dialysis (I've even been to his unit - it is real too, and the best in NYC).

Stauffenville (I would be so happy if you at least gave us a first name - I've named you Henry in my mind) I get it, you are the Yin to DSEN's Yang. You are the voice for the defeated. The voice for the people who just survive, but are bitter because everyone else seems to pretend it is so much better (and you have the journal articles to back you up).

Life is what we make of it. I choose to plod along hoping that things will get better, and appreciating what I have. I've been there, that point where it all seems futile, and acknowledging that I am going to die. I think that it is safe to say that anyone with a diagnosis of CKD5 has been to that dark place. It is always there, hovering. But outside of that "walking on your hands" as you so succinctly put it - can be a sunny day. It can be a day of picnics and waterfalls. Yeah, we may go home to a machine and needles, but that machine allows us to have that picnic, and experience that waterfall. And that, my friend, makes it all worth it. At least to me.

[Anna Bennett Meinuk@aol.com]

I have more to say (who knew?)

Stauffenville, do you know how desperate someone is when they type "how long can a person survive on Dialysis"? - whether it is someone with the diagnosis, or someone who loves them - we're talking lifetime low. Facing imminent mortality. Your voice is important in grounding people, letting them know that this is bad, the numbers are against you. But we know that. We knew that the minute we heard the initial diagnosis. Searching is looking for hope. And there is hope out there. It is a lot of work, and you need to maintain perspective, but stories like Zach's and Bill's are becoming more and more common. Because Dialysis has gotten better. Better than the days when you had a big old machine at home that needed so much attention. My machine had disposable parts. Not good for the environment, but I decided that my life superseded my carbon footprint. (I am selfish that way).

Transplant is amazing for those that can have one. (I have one, and I thank my deceased donor every day) BUT I also thank the pioneers like Dr. Scribner, and the current pioneers like Dr. Steinman et al who are striving to bring nanotechnology into existence. There is a future in dialysis. We need to fight for hope, not wallow in defeat.

[Zach]

Yes, Dr. Theodore Steinman at Beth Israel Deaconess Medical Center in Boston is one of today's true leaders in improving the lives of those on dialysis.

[Bill Peckham]

The 40% of New Zealanders doing HHD (in addition to 40+% doing PD) on the South Island exposes how inapt your analogy is Henry. The structure of the provision of dialysis is the controlling factor, combined with the (or resulting in) the absence of widespread knowledge.

The path forward is to change the structure and increase the knowledge. Telling people they're doomed is one of the all too common problems.

At first I was thinking how insensitive and inappropriate your comment was but on reflection it is probably best to expose people to a naysayer. They are everywhere and if given a chance will happily consign people who need dialysis to the dustbin. Resist! If you are just hearing about CKD beware the nattering nabobs of negativism who want to drag dialyzors down. Tell them they are not wanted, I suggest using the British phrase "Piss off" .

[effie hartley]

when one goes to a dialysis center can anyone go and sit with them? i didnt know if anyone was allowed in there or not.

[Larry Thomas]

Grandmother just passed away after having lived on dialysis for approximately 33 years. She avoided all the foods that she was supposed to avoid, unlike most dialysis patients who disregard those warnings.

[susan handley]

i have one patient who has been on dialysis for 36years. she does not follow the renal diet but always takes her phosphate binders i beliebve this is the ansewer for long term survival

[susan handley]

i am sorry for your loss of your grandmother truely.
i am trying to support many patients who get told ..dont eat this as its bad for you.everyone is individual and should be treated as so.i have had personal bereavement over the last two years so totally understand your grief believe me.

[susan handley]

i have also posted that i feel very sorry for your loss as i have also lost my mom father in law and great niece all from cancer. this did not appear. so i do understand your grief.

i am very passionate for the best care available for my patients.

[Erum]

My mother was suffering from urine infection, and was urinating way more than normal. She has now been diagnoised with a kidney failure and the doctors have asked her to go for dialysis.
But a person with a kidney failure gets little or no urine. What's this case with my mother? She has been taking anti depressants for 10 years now.

[Bill Peckham]

Sorry about your mom. The kidneys keep everything in balance. Healthy kidneys remove not just extra fluid but also excess solutes, such as potassium and phosphorus. Also when removing fluid the kidneys are suppose to keep good things in the blood, for instance protein. Unhealthy kidneys can spill protein into the urine which is why that is taken as a sign of kidney disease.

Your Mom might need dialysis to help her kidneys do their job. Starting dialysis while you are still eliminating urine is easier than starting dialysis with no native urine output.

ordinary person

[Suzanne]

Interesting posts. I suppose I'm a newbie to CKD as I'm newly dx'd at Stage 3. I have co-existing health issues and have been treated for cancer several years ago, including chemo and radiation. Chemo damaged heart, so ultimately, had open heart surgery to try to correct some of those issues. Also have asthma and just recently dx'd with an aortic aneurysm. Also dx'd with diverticulosis during a routine colonoscopy. Am I just lucky or what? LOL I'd say yes. I'm still here and still kickin.

Now, I've maintained a good attitude throughout. With the exception of a few days here and there where I honestly questioned whether it was all worth it. My answer was that it was. I have healed well and recovered well from each surgery/treatment, and/or bit of bad news. Now, however, I find that I'm beginning to lose some of my enthusiasm and unlike dealing withe the other issues, am dreading the idea of treatment for CKD. the idea of ultimate hemodialysis is intimidating. Granted, I know I'm fortunate not to need hemodialysis as yet, and who knows, maybe I won't for many years to come. However, I think people are entitled to become tired of so much medical fooling about after a fashion and are solidly entitled to also get down, distressed and tired of it all. Of course, in my experience, we all bounce back. I mean really, consider the alternatives. Yes, we all like to see positive people in action. Surmounting whatever the beast in their lives happens to be. Dealing, coping well, remaining positive, being cheerful and carrying on. Why? I believe it's because we all want to be spared seeing someone being unhappy and suffering emotionally. We just don't want to see it or know about it really. We want that happy face and that generous smile we all know and love. In reality, there are times when it just isn't there. Perhaps not for several days time running. I think we're all wise to realize that it's ok. Allow people space to be "naysayers" or to be down. They're functioning under heavier burdens than they care to paint a positive picture about at the moment. Give everyone space just to be and to feel however they are feeling, without rebuke.

Misery, just as joy, is part of the human condition. Why must we be so adamant that it not exist/be acknowledged or else throw psychotherapy and/or pills at it, when it is acknowledged? Just because someone's "normal" is not like your own normal, is not always cause for action or concern. It has been my experience that people need time to grieve for things lost. Be that people, health, financial status, pets, career, lifestyle or anything else one considers important to them. Finding new normals that work is perfectly ok. If that means calling a spade a spade once in a while and saying, "this sucks", then it's perfectly ok and can even be healthy in my humble opinion.

So, "Henry" m'friend, you're ok, just as you are. You aren't spreading gloom and doom so much, as you're sharing how you feel. You are expressing yourself, you're entitled and that's ok by me.

Not having a crystal ball, I've no clue what my future holds regarding CKD, or any of my other health issues, but one thing is for certain, whatever it holds, I will do my best with it and yes, I may even have an occasional "Henry Day' and that, I surely hope, will be considered ok too, by those closest to me as well as those I've yet to become acquainted with.

Above all, I wish everyone strength of spirit. I believe it's a major component in managing health issues well, and essential in maintaining focus and yes, even in regaining lost focus.

Suzanne

[Elzie Lavery]

For anyone whose kidneys have failed, and are facing dialysis, let me tell you my experience, having been on hemodialysis in a DCI clinic, in Mt. Pleasant, Pa.
I have been going there for 5 years and 8 months. When I first started....well, let's go back to three months before that. I was a victim of arsenic poisoning, and nearly died, but was a pretty hardy fellow, well muscled and sort of athletic in character. Always did plenty of hard work, and rarely if ever drank. No abused drugs ion my entire life, I am a christian and though not a regular churchgoer I live the right life.
After about a year and a half of my poisoning, my kidenys would work in a manner where they excreted my protein, probably still about 3 liters of urine per day. When I was admitted to the hospital, I weighed 275, about 45 pounds more than my normal weight, my muscles were getting pretty much non-existent, I could hardly walk, that weak.
First thing to do, was get stuck in the neck with the catheter that goes down the jugular to an inch or two above your heart. I ws dialyzed a few times with that, and then it was removed and the tube arrangement of catheter where it comes out your chest was installed, and I began regular dialysis.
About 4 months into the 3 times a week regimen, 4 hours each time, one of the tubes broke while I was at the treatment center on the machine!!!
Plenty of blood squirting out there, to be sure. The nurse immediately got a clamp tip under my skin and found the broken spot, and clamped me off. I was shipped up to the nearest emergency room at Frick hospital nearby, where upon examination, I was scheduled for a catheter replacement the next morning. ( I can only say that since I have been on dialysis, everybody who has tended to me, or advised me on anything, has been incredibly wonderful.)
More later, another entry.

[Elain]

My brother had a liver transplant in 1990 and because of all the medication he takes has and is destroying his kidneys to the point dialysis is being discussed. He also has some other (lesser) problems.he also has problems with very thin blood. I would like to know would he be ok with dialysis maybe transplant.

[Lorraine]

My husband had peritonitis in Oct.2008 that's when it all started. He went directly on Hemo where he stayed for 2 years;with aprox. 8 surgeries to repair the fistula. There were several clotting issues; then on Sept.30,2010 we got the call.
Oct 1, 2011 the transplant went well;but several hours later there were problems. Two months later we left the hospital with a non functioning kidney.He went back on Hemo D. but still had issues with the fistula. Finally it shut down and we opted for PD. In the beginning it was like having a new baby in the house.The alarm would go off so often during the night and the first week we had the cycler it broke down and had to have a new one sent. We made an appointment with a Hemotoligist.WE found out that my husband has a rare blood disorder "polycytemia" that causes his white count to escalate. It also affects his RBC and platelets. Could this be the reason for all the clotting? I have my own thoughts on that.
On a lighter note we now love PD. He feels better and better every day. The cycler now runs pretty smoothly. He used to feel pretty tired after Hemo. and lost his appetite. I would recommend Pd to every one. It's a more natural way to dialyzes.

[roberta mikles]

Lorraine, I am curious. With all the blood work that was done, did you ask why they did not identify this polycythemia prior to your going to a specialist?

[M. Endanawas]

Hi: i am from the great north, was diagnosed with kidney disease in the fall of 2009. I was devastated of course i was on dialysis machine in the hospital for several weeks, three times a week, then went home and hooked up twice a day, then eventually on home PD, now for about two years. I still have a difficult time coming to grips with this because i was a healthy person, at least i thought i was.I was never really given a thorough examination to see if i had this disease earlier. So folks get checked and rechecked because its your health not anyone else! But now i have to live my days like i never did before. Its a whole new change up. I had two infections , today i am very cautious in what i do and how i care for my self. I do my best in following a diet and exercise daily, take my medications as required. I am getting ready for a transplant, getting prepared is a long ride for me. Follow one day at a time and thank god for each day i have! Thanks.

[Julio Silva]

Today is Jan 31 2010 and its only been 4 day since the doc told me that I have stage 4 Kidney fariler, and I am just a basket case. I try to be strong when I am with my family, but when I am alone like I said a basket case. I have been sick for a while with other things and I just thougt that I was getting sicker. I am so scared and I think of this as the beginning of the end. I came on here to find out how long a person with stage 4 would have to live. I am 47 years and I just want to see my girls get married and it breaks my heart to think that I will not be there. I just want to thank everyone that post on here because I know that I am not alone. I have to return to the doc on Feb 17, 2012 to find out more, and I am so scared, but you guys give me a little hope. Its 2 am and my nerves are oin high gear. Thank you all