Well, I was at 29 percent and they took my out but I had to fight my doctors for 1 1/2. Dialysis is no picnic in the park and I have been on it less than 3 months and still feel like crap most of the time. They say it takes about 6 months. I had pain, if you remember.
You are really trading one set of problems for another and the pain was just too bad for too long.
I'd try and find a donor first and then see if they will do it. I know the University of Maryland said they would if I had a donor and so Johns Hopkins.
Pam

kidneys can be removed for pain and infection but, as you already know, that means you will need dialysis unless you get a transplant first.
I had my kidneys removed after transplant because of repeated infections and I have to tell you, removal was a much bigger deal than was transplant. at the same time, the effect on my health was greater than the transplant.
not being infected helped me regain my good health, far more than a kidney transplant.
consider this carefully, discuss with your doctor and get a second opinion, no matter what your doctor says.

With the infection, my doctors want me 6 months kidney free due to the imunosuppressants.

I'm sorry, I don't know the answer to your question but, I have a question about the measurement of kidney function - I see many posts mentioning kidney function as a percentage. How are you all arriving at this number? Is it your GFR or some other measure? Is there a test that tells one what their percentage of function is?

Lisa, The lab calculates your GFR using your creatinine, BUN and various other values. A lot depends upon your race, age, weight, etc. It isn't just done out of the blue. Some places use your creatinine numbers as the important value in determing function, but I'am fairly sure that most doc's and labs using the other values to determine kidney function. Mine is at 37% and has been for the past 3 years, it varies from time to time, but seems to stay in this area. What does your doc or lab tell you what your kidney function is or haven't they ever told you? They must have at some time or another especially as you are in the Halt studies. Let me know ok? How's the heat down there in FL, we are frying up here in New york in 90 degree weather..:(

lots of love,
Norma...

Hi Lisa,

percet function and gfr are not exactly the same thing, but for the lay person they can pretty much be used interchangably. GFR can be higher than 100, while percent function always starts at 100 and goes down from there.

I also know that I was given 2 different numbers in regard to my function by 2 doctors based on the same numbers. One told me my gfr was 25 while the other estimated it at 17. That is a pretty big difference! The second set of numbers was used when I was being worked up for transplant so they might have been influenced by trying to get me approved (which had to be at 20% function or lower to be approved by insurance).

Thanks, Norma and Lindsay - I've replied to you in a separate message (check you boxes!) because this is off the thread of the original question.
Lisa H

I saw a surgeon today. Well, he didn't shoot me down.

Obviously it's not his first choice and he would like to try some intermediate steps first if I will allow it.

We are starting with some more images and both him and I are going to speak with my nephrologist separately and then get back together in a month and discuss before making a decision.