i have been on dialysis for 3 years is it true you can live a decent life on dialysis if so would love to hear your story for motivation
I hope that people who are long-term survivors on dialysis will respond to your message. I’d love to hear more of these inspirational stories. In the meantime, have you seen the patient stories that you can get to from the Home Dialysis Central home page?
I am not a patient myself, but have worked with people who have kidney disease and kidney failure since 1978. I know several patients that have lived 25-30 years or more. Some of the first dialysis patients I worked with are alive today. Some have had transplants along the way. Others have been on dialysis the whole time.
One of the patients I know who started dialysis as a teenager in the late 1970s did in-center hemodialysis for a few years, but when she got married, her husband learned how to be her home dialysis partner. She completed college while working full-time and continues working full-time at a university. She would never allow her profile to be written because she doesn’t want her co-workers to know she’s on dialysis out of fear that they would treat her like a sick person which she doesn’t consider herself to be (incidentally, her supervisor does know she’s on dialysis).
Another patient I know developed kidney failure in medical school. He completed medical school and is a practicing physician. He’s never had a transplant and his wife has been his home hemo partner for over 30 years. He essentially does his treatment and she is present in the home if he needs help, although she could do what she needs to if he needs her help.
Another patient I know developed kidney failure nearly 30 years ago when he was a teenager. His parents expected him to take responsibility for his illness and to do what other teens do. Over the years, he has done PD, in-center hemo, and home hemo. He also had transplants that failed in the early days of transplantation when matching wasn’t as good and drugs weren’t as effective. While on dialysis he got finished high school and got help from Vocational Rehabilitation to attend and complete his college degree. He has worked two different careers and changed jobs with kidney failure. He now works for the federal government full-time and has been at his agency for several years. He currently has a kidney transplant.
These are just a few of the stories that I know about personally. Incidentally, Medical Education Institute did qualitative research (interviews) with long-term survivors on dialysis. To participate in the study, they had to have been on dialysis 15 years or longer. The researcher found that one common theme in the stories she heard from patients was that they were all active comprehensive self-managers – and many had done or were doing home dialysis. You might want to read some of the newsletters that Life Options has written on this topic:
www.lifeoptions.org/catalog/catalog.php?prodCat=newsletters
I’ve been a long time patient and would have to say yes and no…
Depending on your current health status, physically, and mentally…
The most important in having a decent satisfying experience living and doing dialysis is being compliant about your treatments. Taking charge of yourself, but there are some consequences that limit you from having a full decent satisfying lifestyle…it’s the responsibilty of caring for your own illness.
This new lifestyle pushes you to a more compatible living that will not intefere with your treatments and how you cope with it. No one else will understand you but only you.
You are part of a new community of people who are coping with a long term illness and will never be the same as when we were living a full decent lifetstle and it is important to not fear our identity of who we are and what we’re going through or how we do it. We should be proud and thankful that we’re still alive, one of the most precious things in life…
I forgot to mention something else that the researcher found so far as what long-term patients told themselves (affirmations) that helped them to come to terms with being on dialysis and may have helped them survive for 15 years or more. The messages were pretty consistent across the patients studied:
– I want to live. Although most people don’t have to think about this, people on dialysis must make this choice when diagnosed, every day when they made decisions about their health, and when health setbacks occur as they often do. Also saying this was a way of affirming that they were willing to adapt to live with dialysis.
– I am still me. These study participants accepted that they had kidney disease but it was important to them that their identity wasn’t linked totally to their disease. They knew their lives were different, but they believed they were ultimately the same person as they had been.
– I am still valuable. They came to understand that they were worthwhile people…in fact, too valuable to give up and die.
– I am in control. They knew they couldn’t control everything but they did their best to take control over those things they could control.
All considered the fact that their health was uncertain which made planning for the future difficult. To cope with the uncertainty, they chose to live in the present.
One person in the study said, “It’s a very different life, but I am willing to live it. I am willing to face whatever this different life brings about. I’m very aware of the drastic change in lifestyle…I cannot go back to the wait it used to be…It’s like I have–I’ve lived two lives. One life when I was healthy and then this life with this illness.”
I suspect many on this board have thought these things. When I heard the results of the study and the affirmations of long-term survivors, I recognized all of them from patients I knew who had adjusted to having kidney disease. I hope that more people just starting out with kidney disease will read these affirmations and start saying them to themselves every day. The mind is a powerful tool, more powerful than most of us recognize.
This is the citation for the study if anyone wants to read it. Medical libraries should have the journal.
Curtin RB, Mapes D, Petillo M, Oberley E: Long-term dialysis survivors: A transformational experience. Qual Health Res 12(5):609-624, 2002.
I wasn’t going to post in this thread because I’ve only been on dialysis for 3 years, like the original poster. There is absolutely no guarantee I will live long, and I’m already 52, but, I think that patients who take an active interest and control in their dialysis probably end up with better dialysis, for one thing (even if it’s the conventional in-centre kind, just because they expect things to be right and they speak up when they aren’t), and they probably do other things that matter, like remaining active or exercising regularly (no matter whether or not they work for pay). They stay more fit, and so they put more of the odds in their favour, especially with regard to helping to prevent cardiovascular disease. After all, we all know it’s the cardiovascular things that are most likely to kill a dialysis patient, not the actual dialysis or even the kidney failure itself.
Pierre
"The day was quite hot and close friends, family and I went to the Grand Water slides, yay!!..
As we arrived at the theme park I couldn’t believe how packed this day was, people, people everywhere, woohoo!! 8)
As soon as I got accross the gate I sped as fast as I can to the changing room area I got my shorts on and heck almost slipped from too much excitement!..finally, headed towards the stairs climbing my way up to the top of the water slides!! The higher I climbed my heart thumped harder and harder, trying to gasp for more air…I didn’t give up cuz the excitement of getting on that water slide was my goal…
As soon as I arrived in line with all the slide-goers I was about 4th in line and what not! Something shocked me… :shock: Everyone was staring at something? But who? I looked back and didn’t see no one there…I looked sideways and nothing there, then I glanced at them again and noticed they were staring at me!! But why? …The slides were all ready filled with water and they all just stood there…staring at me…non of them would get on slide till I got on first…"
:oops:
Sometimes I wonder, after many years of living without such chronic illnesses and later in life in the age group your in, how different would you think you would have felt if you’d start dialysis at an earlier age, perhaps 9, or maybe 14 years old?
Do you consider coping with dialysis at this age quite harder than those who started at an early age?
Not long enough… I can still think and breathe.
Too Long …
The 1st couple years were burdonsome then the next ten were a breeze…but only kinda in retrospect…then things began slowing down around 15-16 years out then I hit my stride at 20 and now I’m ready to pack it in. I think the worst effects that I’ve experienced (excepting any type of ‘sharp-stick-in-the-eye’ events) is bone disease and I guess that just makes me feel older sooner.
re: sharp stick in the eye: in my dialysis circles whenever anyone would feel reticent about a medical procedure and ask someone else who’d already undergone it whether it hurt…they would always answer, " well, it’s better than a sharp stick in the eye!" 
Beth Wrote
(affirmations) that helped them to come to terms with being on dialysis and may have helped them survive for 15 years or more. The messages were pretty consistent across the patients studied:
I would add: NEVER GIVE UP!
you should appreciate this being an amateur zooologist
Also, I don’t think I ever had to think about ‘wanting to Live’ it was not so much a choice as a integral life-force that refused to bow under to…adversity or anything… I think in some it is simply WILL and comes with the territory…I have seen many people surrender to kidney failure,
they just ‘lay back’ …I have never ‘laid back’ …as in when the doctor or nurse comes in and says 'just lay back!" I’m sitting up on the gurney watching it all … I remember the cowboy says to his ‘pard’ ‘sit me up’ or ‘stand me up’ cause …ya know, cuz you won’t die standing up…
Hahah, funny pic there! :lol:
P.S. I see you mentioned cowboy, you must be an avid fan of movies of the wildwest, perhaps spaghettie westerns? :roll: