As I start cleaning the machine i think damn this is my fourth year dialyzing. And as we all know if you read things on line it can be depressing to learn that the future is not that bright. Stats shows you have a small chaNCE to make it 5 years. I wonder why is this. What is the reason you cant live a long time dialyzing. What are some possitive things that shows you can live and enjoy life. lets hear so good stories about people living good lives dialyzing. I have started going back to school at the age of 40. to get another degree, and i still work. And have a great wife. So i have to ask do people live good lives on dialysis?
Dang, that’s a good thought there… :idea:
I have been dialyzing since 1978 and had a kidney transplant that last almost 3 years…currently am only a career student and I don’t have riches, a car , or any fancies like most dialysis patients do.
Today, am still here alive and well, …still doing dialysis.
There’s a combination of things in order to live a satisfying life on dialysis, its not easy but sure is challenging.
Alot of patients today on dialysis suffer from mental illnesses which is the biggest barrier in preventing them to live a decent life on dialysis. Even stress itself is a mental illness. :roll:
So how do we do it?
Beeing rich with alot of money doesn’t give you a satisfying life on dialysis…so what do you think it could be?
For the most part, life is precious and only GOD know when he’ll call you, just complete your mission. 
WHAT stats??? When I was training for H.H.D., a fair number of previously-trained home dialysers would wander into the unit from time-to-time and for various reasons. THe home prog. has only been going for a few years, but many of these had been in-patient dialysers before that. Some have been dialysing for years - like Gus, and like him some had had transplants that had lasted for various periods, before failing. MOst of them seemed to be in good health & spirits. The staff would get one of them to talk to one or more of us, sometimes, to advise us/raise moral etc.*
Once I got onto these boards, I had a few personal e-mails from people who’d been home dialysing for long periods, to give me hope & positivity for the future. * Now it’s my turn to chat to patients/raise moral, when I call in at the Home Training unit. 
Medical knowledge and technical advances, like newer/better machines, should improve our prognoses in the coming years…
O.K. , so I feel very tired post-dx and only good on the other days. But that’s still better than a lot of people. MY appetite is good and I am enjoying life again, as I have not done for at least 3 years!!! Looking to get back into surfing…maybe not as often as before, but with more energy than I had for the last 6months or more before I had to pack it in, a few years ago (I need to get a special neoprene sleeve made to cover the fistula, before I feel confident/safe enough to go back in).
How long this will all last, I don’t know. But I keep hoping 8)
People certainly do have good and long lives on dialysis. In fact I am compiling (hopefully inspirational )stories for a book to be published out here in Aussie Land about people at all stages of kidney disease.
I have been concerned (like most people) since I was diagnosed with kidney disease over 14 years ago, that there was never much published about how kidney people can and do live rich and full lives. There was a lot by medical people but really we are our own best advocates. I set about finding these people and hey they are everywhere. From kids to oldies and from all cultures and walks of life. I hope my book will be available at Nephrologists office in Oz so when those people newly diagnosed come out with their heads spinning , they will have something positive to read which will show them that life isn’t going to end.
We are an amazing bunch, resourceful, empathetic and inspiring. We make every day count. The people on this forum embody this spirit. 8) 8)
Hi y’all,
Terry&Heather wrote:
Stats shows you have a small chaNCE to make it 5 years. I wonder why is this. What is the reason you cant live a long time dialyzing. What are some possitive things that shows you can live and enjoy life.
This is a question we’ve been dealing with for years at the non-profit Medical Education Institute, and one of the main reasons we built this site in the first place. You can read about our reasoning right on this site at http://www.homedialysis.org/v1/about/.
We also included tons of patient success stories for exactly the reasons you say–to inspire others. (Sometimes I think folks forget that there’s a lot more to this site than just the message boards!). You can read the stories at http://www.homedialysis.org/v1/profiles/.
One last thing to keep in mind: statistics apply to groups, not to individuals. There are plenty of things you can do to have a good life.
Hi Dori
You site has many great patient stories I know. What I am doing is not duplicating that, but hopefully providing something in booklet form specifically for new (and old) Aussie patients, who maybe aren’t ready for dealing with any dialysis issues yet as they have only just found out what they maybe in for, years down the track.
Cheers 8) Beachy
Hi Beachy,
The more positive stories out there, the better! I think your idea is terrific, and when you get your book done, we can help you promote it. 
[b][i][u][color=red][/color
I WANT TO SEE A PICTURE OF THE ARTIFICIAL KIDNEY DIALYSIS GRAFT THAT THE VASCULAR SURGEON PUT IN MY RIGHT LOWER ARM FOR DIALYSIS AND LEARN ABOUT THE ANATOMY OF IT AND HOW IT IS MADE AND HOW THE VEIN AND ARTERY ARE EITHER CONNECTED OR JUST GET FASTENED TO THE PLASTIC TUBING GRAFT. I WANT TO SEE HOW THIS IS DONE SO I CAN UNDERSTAND IT BETTER OR HAVE A GOOD EXPLANATION OF HOW IT IS MADE IN MY ARM AND JUST WHAT IT DOES EXACTLY–CAN U PLEASE GET ME THIS AND SEND IT TO MY E-MAIL AT PRECIOUS@CAPITAL.NET AS SOON AS POSSIBLE AS I AM QUITE UPSET ABOUT IT CAUSE I DO NOT UNDERSTAND IT. I AM 63 AND THE FISTULA I YAD IN MY LEFT ARM ONLY LASTED 6 MONTHS AND I STILL HAVE THE CATHETER IN MY NECK IN THE JUGGLER VEIN YET. PLEASE SEND ME WHAT U CAN ASAPOSSIBLE AND WELL APPRECIATED. THANKS ALOT . BARB[/u][/i][/b] :lol: :lol: :lol: :lol: :lol: :lol:
I intend on living for quite a long time. I told Dr. Vu to keep me alive as long as he could so I could be the biggest pain in my wifes a$$ as long as possible. Don’t get me wrong I love my wife with all of my heart even after 15 years of marriage. I just feel that if she was stupid enough to marrie me I’m going to make her earn it. I have had problems since I was 18 months and now after 39 years I have had to start diaylsis. I am not going to make it easy for this diease either I intend to fight with every ounce of my being.
Or this here…
CREATING
AV FISTULAS[/quote]
Adding on… Or this site (with photos of my friend’s actual surgery!)
http://www.myfistula.net/dialysis/access/surgery/photos/index.html
most of the stats the is not positive is stats for america many other countries have better stats and they believe its because other countries dialyze longer then we do in america.can more dialysis be one of the keys to a better life
Hi y’all,
Terry and Heather wrote:
most of the stats the is not positive is stats for america many other countries have better stats and they believe its because other countries dialyze longer then we do in america.can more dialysis be one of the keys to a better life
True! We have an article about why more HD is better, at: http://www.homedialysis.org/v1/rotating/0106topicofthemonth.shtml.
I’ve been underwhelmed with the approach toward HD “adequacy” in the U.S. The thought seems to be that since more than 90% of U.S. patients now reach the K/DOQI Guideline level for adequacy, there’s no further room for improvement. But the K/DOQI levels are floors, not ceilings.
The HEMO study showed pretty conclusively that it’s not really possible to improve patient outcomes in the context of doing three times a week HD for 3 or 4 hours at a time. Well, duh! :twisted: In Tassin, France, where nocturnal HD has been done for 8 hours, three times a week, they have the best outcomes in the world. At least two small studies have demonstrated better survival among patients who are doing short daily treatments 6-7 days a week. Improvements in “adequacy” have to come from markedly increasing (i.e., doubling) treatment time, increasing the frequency of treatments–or, preferably both.
Such A long thread I almost forgot what is was about!
Who are these people that say these things? The statiticians!
Why do we go on, we’re survivors…
I’m considering home haemo, as I’m now on haemo, again, after meningitis knocking back my third transplant & nearly killing me.
But we go on, have I had a good life so far, define good, & I will tell you.
We don’t all make it through that long. A few years ago a lost a close colleague & friend to kidney related issues, she was only 21, but what I do?
I grieve, for a long time, but I don’t give up, the choice only existing at the worst of times.