just wanted to know read it was not looking good for us about 5 years at the most do anyone have any info on this
If you look at the national statistics for the U.S., they don’t look too good. But statistics do not apply to individuals. If you go to one of our other sites–Kidney School™ http://www.kidneyschool.org, you can read about Nancy, whose kidneys failed in 1966 when she was 19 years old. She’s still doing terrific today, and is now on her 4th transplant after doing various types of home dialysis. People can and do live for decades with kidney failure–but it doesn’t happen by accident.
How long you or someone you love will survive with kidney failure depends on a lot of factors, including:
– How old you are when your kidneys fail (the younger you are, the longer you are likely to live)
– What illness caused your kidney failure, and how your health is otherwise (people with many other serious illnesses are unlikely to live as long as people who are pretty healthy other than kidney failure)
– How well you take care of yourself (people who take an active role in their care and follow their treatment plans tend to do better and live longer than people who don’t)
– How good your medical and dialysis care are
The latter is one of the reasons we started this site: we believe, based on all of the research that has been done to date–but most importantly based on how patients tell us they feel–that the more physiologic (like the human body) dialysis treatment is, the better patients will feel and the longer they will live. So, treatments that are done every day–like PD, or nearly every day–like short daily home hemo, or, even better, treatments that are longer–like nocturnal home hemo (done as many days per week as possible) will support a full, active, productive life much longer than three times per week in-center hemo, with fewer long-term complications.
None of us gets out of here alive. Please don’t spend your time worrying about how you or your loved one may die sooner because of kidney failure–any of us could encounter an accident tomorrow. Instead, why not focus your energy on how to live as long and as well as possible with kidney disease? You just might surprise yourself.
No, no, no. The five year figure comes from extrapolating the average yearly mortalityn rate - always remember: Averages are made of extremes. The average mortality is above 20% a year for all people on dialysis. So if you take a group of 100 people starting dialysis and there is a 20% yearly mortality rate, then after 5 years fewer than 50 of the initial 100 people will remain alive.
However, there is no upper limit on how long someone starting dialysis today will live - I know someone who has been on dialysis continuously for over 34 years and another person who has had ESRD for nearly 40 years (she is on her forth transplant). I started dialysis in 1990, no one knows how long someone who started dialysis in 1990 will have; let alone how long someone who starts dialysis today will have. When you consider the healthier options that we have today - more frequent dialysis, especially more frequent nocturnal dialysis - there is no way to know what that means in regard to mortality.
You can live a long time while using dialysis to replace your kidney’s function but studies have shown that those who do best on dialysis are those who take an active role in their treatment. By coming here, to this web site, you have taken the first step. The next step is making healthy treatment decisions.
Terry - tell us more about the situation. Are you the one with diminished kidney function? Where are you in the process? This board is a great resource - just keep asking questions - ask us but more importantly ask questions of your renal care team.
When first started dialysis at age seven in 1978 I was given a death date by my Dr. at that time, he said I would only make it to 10…
This month I will be 36 years of age, and I must thank almighty GOD my savior…and the caring people around me. Because of them I am still here alive and well.
Life expectancy on dialysis is different for everyone and I must stress that we shouldn’t put a number on people…how would you like staff telling you that you will only live a number of certain years? :roll:
I must agree with Bill, those of who are very involved with our own health must be the ones who live long…
You are amazing! Whenever I read posts by yourself, Bill or Pierre I feel this old world of ours isn’t so big and bad after all!
Even though I live on the other side of the world it is great to know people support each other and give out such strength.
I totally agree!! 8) What I have learned from them, and others on message boards, has been a life saver for my husband and has probably added many high quality years to his life. And that’s in addition to what their kind support has meant to me :!:
The bottom-line about these statistics is that they are heavily slanted by virtue of including many people who start dialysis already very sick. They aren’t really very relevant for people who are relatively healthy other than having kidney failure. Plus, there’s a time lag before statistics show improvements as the technology of dialysis treatment evolves (and I don’t mean the machines so much as the medications which are available, and just better all round care. But we can certainly assume we are taking a positive step by choosing daily dialysis.
There are times we don’t necessarily see things exactly the same way, but I think Gus and Bill are terrific.
I’m not usually the sort who posts anything anywhere (and who rarely steeps herself in anything patient-related!), but this is my first sojourn to this website and I just had a bit of a knee-jerk reaction and felt compelled to do it this time … taking a tiny break at work, surfing around on the internet and happened upon it. In a nutshell: I’m a single female, a hemodialysis patient since August 1979 at age 22. Always in-center hemo (in four cities and three States of residence), no transplants. Always full-time employed. Always! I have a B.A. plus certification in a white-collar office profession in which I have maintained full-time employment throughout my hemodialysis patient career. Just so Terry (and whoever else might benefit from this disclosure) knows … it can be done!
The hour of my posts from work is this late because I dialyze early A.M. hours then pop home to change clothes and drive 20 miles to my office. I generally work a full eight hours or more beginning at 10:00-ish A.M. Lots to do since we’ve just come off of a three-day weekend!
You are my hero, I wish I had your drive!! I am a 27 year old female, dianose at ae 22. For 5 years I ave been so lost, not knowin wat i was put on tis eart to do, iven this disease, its so ard, and to ear tat you are so stron and work everday…you have the life i want.
Personally, I don’t bother with any of those statistics. I have been living a very ‘otherwise’ healthy life, since starting dialysis 5 years ago (obviously aside from dialysis! ha ha), and I am now 29. I started dialysis when my darling daughter was 7 days old.
I think the key is to stay positive, and take care of yourself. While of course I occasionally indulge in a chocolate bar (or two), I adhere to my dietary restrictions as best I can, and compensate by doing additional dialysis if I have cheated a bit. I think by looking at numbers (life expectancy) we are only cheating ourselves of living in the moment.
Try to stay positve.
Kidney_Mom in Canada
I’ve been thinking a lot about this in the last few days. Mainly because I was planning my finances. I pay everything out of pocket.
I know each individual is different. But, let’s take my case. I have a lot of the co-morbidities associated with dialysis. I have Hep C, peripheral neuropathy, LVH and bone disease. I am on daily nocturnal home hemo. I would really like to know how long I can expect to live. That will help me plan my finances. Whether I should keep whatever I have and spend from that or invest in a plan that will make sure I get a monthly income after 10 or 15 years.
Yes, there are people that have been on dialysis for 35 years. What about people with these co-morbidities?
I am not asking for a figure - that I will live for x years. But I would really like to know your thoughts on this.
Why don’t you ask Dr. Agar that question, Kamal. He has one of the largest populations of folks doing nocturnal HD that I’m aware of, and certainly many of them have been about your age and had similar comorbidities.
Good idea Dori. I will do that.
The average I was given was 9 years, however, I’ve outlived those 9 years on heamo, and the 3 transplants, cancer, meningitis… (OK I’ll cease boasting) Now in the 3rd year on Home Heamo…
There’s some pretty amazing folks on here:)
Life expectancy varies based on how old you are when you started dialysis (i.e., someone who is 86 when they start isn’t likely to live another 30 years–with or without dialysis), what other illnesses you have, and how well you take care of yourself. So, there isn’t any one number (5 years, 9 years) that is suitable for everyone. What IS clear is that the more treatment you get, the more your body works the way it’s supposed to, and the longer you’re likely to live.
I don’t pay attention to numbers and statistics. I think it is in the persons mind and heart as much as it is in the science. If you have a will to live and fight on, I believe you have a better chance of living longer than someone who is constantly depressed and hating life. The power of believing, the power of prayer and the power of support can beat any number.
i started dialysis in 1993 at the age of 26 am now 42 and still going i thank God everyday, for giving me another chance at , .In my country there was no dialysis. I found out that recently a doctor started but its too expensive and the goverment there does nothing to help, my country people are dying,because of the lack of dialysis.At this point think the only person who knows how long each individual has on dialysis is God.
I think everyone on dialysis should look at the bright side of things, i know its something hard to do, but at the end of the road there is always a bright light and hope that one day something better will come
Thanks for sharing. I may mention that I came to this page as a new 3-times-weekly in-center dialysis patient, but one who is under 50 years of age and fairly healthy in most other respects… I was wondering, frankly, how long I might have, and your example and others are definitely encouraging.
While it is true that average life expectancies aren’t those of any one individual, on the other hand every individual does or may partake of the average and common rank of things. Any one of those of us on dialysis treatments, may be culled by that 20 % yearly mortality figure at any time… but it is also true that the exceptional achievers among us can get very far beyond it.
Though every minute is valuable, I hope to have some years left to continue valuing life as highly as I can maintain it!
Guest, if you’ve found this page, then you know that home dialysis is a possibility. As a pretty young and otherwise healthy person, I hope you’ll seriously think about choosing a home option! It will vastly improve your chance of sleeping and eating better, having a better sex life (see this month’s Topic of the Month article–in fact, see them ALL here: http://www.homedialysis.org/resources/reading/), taking fewer meds, staying out of the hospital–AND living longer.