Dialysis Support Group

Hi Jhogga, i assume by 25 percent you mean kidney function. I was all the way in kidney failure when i went to the doctor so i went on dialysis immediately 8 months ago. i'm also type O and face a two year wait here in fla for a deceased kidney but i have a fellow reporter willing to give me a kidney and she's type O. I expect to officially go on the list this week, after many tests, so I'm looking forward to getting out of this mess. best of luck to you and i hope you don't have to go on dialysis because it's a drag. george white.

Hi George, yes 21% function. Glad to hear you have a donor. I just wonder - how far below 20% before you start dialysis? Can you go down to 15% or is it right at 20%? thanks for your support - J

My understanding was 10%. Supposedly Medicare will not pay for dialysis until then.

At that point I was unable to do anything other than lie down, eat and use the facilities.

Maybe that has changed, it sure should have. I was close to dying in my opinion.

It sounds like you've got a lot of questions which is understandable. Perhaps your Doctor is not aware, or doesn't care, that you need more information. Don't hesitate to switch Doctors. Many patients look on their Doctor as the person who's "Going to save my life". Maybe, but thousands of other Doctors can do the same thing.

You have to look out for yourself. Ask questions, don't leave without answers. Write them down and cross them off when you have an appointment.

Join American Association of Kidnay Patients, a link is down below. There are other organizations. Online sites are free.

Remember you are your best advocate, perhaps your only one. Information is your life.

Best of luck to you. When things get bad remember how lucky you are that dialysis exists. There are no similar treatments for heart/liver/lung failure. And when you feel really bad take a look at others. Someone always is worse off.

http://www.aakp.org/

Hi, I am in UK, I have a friend who has been at 10% for years now, he is 80 years old,they prepared him for transplant 10 years ago and hes still plodding on,he gets really tired but can still get about, he doesnt want to go on to dialysis until he is absolutely forced,they have told him that if his function goes below 10 he wont have a choice.
I am ok at the moment mine is 45% but its been steadily going down,I have my next test next month so I am hoping its stayed the same, I am diabetic and thats one of the complications.
Best wishes.

Thank you all information is very much appreciated. When you took at function levels, what is more important - blood function or the 24 hour urine function % - Blood is at 21% and 24 urine is at around 30-35%. Doctor can not tell me which one is the correct % so if either hits 20%, you go on the transplant list - is this correct?

All I know is I was down to 13% when they put me on dialysis. I was feeling pretty ill by then..vomiting. no appetite weight loss.I have been on dialysis for 6 months and I don't have a problem with it.Personally I would rather take my chances with dialysis then a transplant that would maybe only last two years especially a cadaver kidney. :) SUe

I recently found out that my kidney function dropped to the 20% or lower range. I was stable for years, so this lower function is new to me. I have fatigue and that is about it. I made adjustments to my life and that helped. I have started the process for a transplant. I am facing the same kind of uncertainty, I dont know what will happen to my health in the interim. I am still working and will continue to do so. Hang in there.

They started me on dialysis when I hit 15%. I was not automatically put on the list when I hit a certain % I still had to qualify through a barage of test. It is great that you have donors that is the hard part. I would definitely get the doctors to stop and answer your questions they are valid and important.
God bless
jcos

http://www.kidney.org/

thais is a great site to check out.

I was septic when I went on dialysis. Multiple symptomes.

Keep asking questions do research.

I am on the national list have type B.

Dallas area I bet has the swap program, when you have a donor not your type gives to some one with a donor with your type check it out.

My hubby was going to be my donor but they found prostate cancer. to me this is a God thing finding the cancer early, he usualy does not go to drs.

This isn't my first rodeo. I had a liver transplant twelve years ago, and I had to reach 0% before a donor was found. Now it's time to hope for a kidney transplant. A year ago I was told that I was years away from dialysis. That was good, then I tanked. On Christmas morning I was in the ER being told that I was at3% function. Stay alert. So I've spent the last five months in and out of hospitals learning as I go, but I don't want information on a need to know basis. Anyone else? My doctor acts like medical information is top secret and I'm too stupid to understand. In six years she never even gave me a pamphlet to read. Is this common? I'm in the wildrness here. Fran