1. < Chronic Kidney Disease (CKD)
Profile picture for jprust

When do you know if it is time to start dialysis with CKD?

Posted by jprust @jprust, Feb 16, 2023

My spouse seems to be declining more but his labs are staying steady. His GFR is 17, his creatine is 3.4. He is 6’1” and now weighs 163 pounds. He is in pain and very fatigued-sleeps a lot. He also has fibromyalgia and has been in pain from that for a decade. So it is difficult to know about the source of the pain. I feel like we are waiting for something to happen-like a sign. Any clues as to what finally happened to cause you to go on dialysis.

Interested in more discussions like this? Go to the Chronic Kidney Disease (CKD) Support Group.

Profile picture for Ginger, Volunteer Mentor
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 7 5:34pm
In reply to @vstates66 "@gingerw Dialysis and next steps are a very personal decision based on your health and living..." + (show)
Profile picture for vstates66 @vstates66

@gingerw
Dialysis and next steps are a very personal decision based on your health and living circumstances. I was at a eGFR of 12 and declining quickly. I started to promote my need for a living donor by creating posters and handouts. I located a donor and was transplanted last year. I know that is unusual and a miracle. If I didn’t find a donor so quickly, I would go on dialysis to ensure quality of life without a doubt. Positive attitude, faith and consulting with your doctors are critical.

Jump to this post

@vstates66 Congratulations on your transplant! That is simply awesome to hear! How are you feeling these days?

I knew that I would end up on dialysis, and chose peritoneal dialysis, at home. Consulting with my medical team was crucial, and as we all agree, I am part of that team. For them, my situation is a bit unusual. As some of my treatments have morphed or changed these last 5 years, it can be considered an experiment, cobbling two major health concerns together for simultaneous treatment. Doing peritoneal dialysis, with toxins pulled off everyday, my body is better able to handle the chemotherapy regimen for my blood cancer. There is no reluctance to be a "guinea pig" for figuring out optimal ways to handle complex cases!
Ginger

REPLY
Profile picture for stuartbell
stuartbell | @stuartbell | Feb 8 12:00pm

three separate Nephrologists over a 10 year period would not do any necessary tests to isolate the cause of my CKD. When I suggested medications they responded with, "I've been a Nephrologist for ..... what is your training.

Tried my PCP, the insurance company, and on-line sources. Found one at Mayo clinic, wrote to him and nothing in return.

They act like tjey kake their money on dialysis.

REPLY
View MoreView Less
Please sign in or register to post a reply.