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

@jprust Welcome to Mayo Clinic Connect, in case you have not been welcomed, yet. Being a caregiver to your husband comes with its own set of responsibilities, but don't forget about taking care of yourself, too!

I am a chronic kidney disease patient, and started dialysis last September. In addition to that, like your husband I deal with fibromyalgia, and am actively on chemo for a blood cancer [unrelated to the kidney disease]. This is my experience. While I have been followed for many years with my kidney team, my eGFR slowly declined. As my health in general declined due to the combination of co-morbidities, my nephrologist said I could start dialysis at any time., but I resisted that idea! Afterall, I was at 18%, way too early to start dialysis in my thoughts. Well, by July 2022 I really was feeling poorly, and looking at my situation, I knew the only thing I could change was to pursue dialysis. So I am now on PD, and started that at 14% function.

It took me about 3 months to start feeling better, but it has worked! It is an individual case-by-case basis, but in my opinion, and the opinion of my team, starting dialysis at a higher eGFR level has a benefit. My kidneys have recovered to 19% now. I cannot be transplanted due to the cancer, so I knew that once I started dialysis, that is my lot in life for the rest of my life. Your husband's story may vary.

I would strongly encourage him to have a very frank discussion with his medical team, and include you and your thoughts. Dialysis can be either hemodialysis [home or in-center] or peritoneal dialysis done at home. In my opinion, better to start when you have a choice, not when your body crashes. What questions do you have for me?
Ginger

That was very helpful and insightful. I am still confused as to what symptoms are the factors in deciding? The nephrologist said she doesn’t just go by labs, but also symptoms. But what symptoms? Like being fatigued for more than x number of hours per day? Pain? Gout? And at what point of GFR do people go on dialysis?
I think my husband has gradually gotten used to being fatigued and in pain over the years and just keeps thinking he is “not that bad”. But I do not want to be the one that pushes him into it before he is ready.

@jprust What many of us will tell you, is that chronic kidney disease usually sneaks up on us. That is to say, our bodies get used to the kidneys slowly losing function, and accommodate for it. It is only after we look backwards that we might realize we weren't feeling good for some time! Add in other health issues like his fibromyalgia, and you get my picture, right?

Symptoms your husband might consider, and his nephrologist is looking at, is his daily energy level, how he feels, how is his sleep quality, his appetite., even his skin health [does it have good color, or pasty] She is looking at his albumin levels, among other blood test values.

In my own situation, I wanted dialysis to help me recover some kidney function, which it has, and help me feel better by cleaning my blood more completely than my failing kidneys were doing.
Ginger

Thank you for responding. The more information I get, the less anxious I get. I just read an article about the option of not doing dialysis when a person is 75+ as it does not give you that much of a prolonged life. My husband has talked about that also.

@jprust I feel that the decision to do dialysis is a personal one, for sure. If your husband was to decide to not do dialysis, I would hope he has complete information from the social worker and medical team, as to what to expect physically/mentally. and emotionally.
Ginger

So far we only went to one informational training session about dialysis. Hubby is a retired dentist, so knows how to find good research from reliable sources. I just feel that he is waiting for some sign before making a decision.

@jprust One thing my nephrologist was asking me each time we met, was to find out if I had any nausea or vomiting. Apparently this is a sign of the kidneys starting to fail even more, as toxins back up in our system. I must have a cast iron stomach., as these never happened. I do know that since starting the peritoneal dialysis, I feel better, and I am of the opinion it is cleaning my blood to a point that is allowing my chemo medications for multiple myeloma to work better.
Ginger

That is good to know also. It is amazing how much medical knowledge people have on here. You have to be to guide your own care.
The nephrologist is watching my hubby’s weight pretty closely.

@jprust I know it has been a couple of months since we connected here on Connect. How are you doing, and also importantly, how is your husband doing? Has he made any decisions about dialysis, or further treatment?
Ginger

More than a year later. My husbands egfr is now at 12. The nephrologist called after the last bloodwork and asked him a bunch of questions. He has not lost weight. He is very fatigued, and about a month ago was having bouts of rage. He has bipolar but it has been in remission for years. In the past this has happened in the spring.
My questions are about the initial startup for dialysis when he needs it. He wants to do the PD home dialysis.
Can you tell me the way this happens? When do they start preparing the site and how do they train? Does someone come to the house and evaluate to help us make the space?

He had a gfr of 17 for a few years, then it was 16. Then a month ago it was 13, then a week later it was 12.
The kidney damage was from taking lithium for 30+ years. He is on a transplant list but odds are he won’t get a kidney as he is 75 years old.