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

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.

@jprust Typically, a vascular surgeon will evaluate the person to see if they can do peritoneal dialysis. Reasons that might go against it include previous abdominal surgeries, scar tissue, digestive issues, body type. If everything checks out, usually a peritoneal catheter is placed about 2 months before starting dialysis. I had my catheter placed 8/1/22, and then went through the healing process. In-center training for a week, to learn the details of what to do, and started home dialysis on my own 9/12/22. Yes, they sent a PD nurse to our house to evaluate the situation, including where I would be doing the work, how things would be stored, etc. She offered helpful comments and pointed out things that I might have missed. For me, because of my prescription, I do manual exchanges versus using a machine at night.

I started my dialysis at a eGFR of 14%.

If you want to consider a transplant, do not let his age rule that out. If you don't inquire, the answer will be "no". While there may be other reasons to not be eligible, age shouldn't be a factor so much. Remind me again of where you live, and if there is a transplant center near you? I am turning 71, and am now being considered for evaluation for transplant. What may not allow me to go further is the fact I am a blood cancer patient, not my age!

Thanks for coming back and checking in. Any other questions?
Ginger

Thank you, That was a very good summary. Hubby is already on a transplant list. He went through all the evaluations a year ago and does the monthly blood draws for that.

@jprust As mentioned, I started my dialysis at 14% eGFR. Many people don't start dialysis until they are at 10% or below, or showing critical symptoms. There are studies that show if someone starts dialysis at a higher percentage of kidney function, their body may tolerate it better, because they are not so compromised physically.

Although it may not be what your husband wants to do, I would gently suggest he consider looking into dialysis now. Don't wait. For me, it made me feel better in a very short time!
Ginger

That is good advice. I would love to address this with him. He is a retired dentist so he feels he does tons of research with medical journals. At this point he doesn’t even want me to go with him to the nephrologist because I might say something he doesn’t want me to say.
Thank you for sharing your experience with everyone. It is very helpful.

That is good advice. I would love to address this with him. He is a retired dentist so he feels he does tons of research with medical journals. At this point he doesn’t even want me to go with him to the nephrologist because I might say something he doesn’t want me to say.
Thank you for sharing your experience with everyone. It is very helpful.

@jprust I hate to just jump into the middle of your conversation with @gingerw , but I thought I would add some thoughts or two. Whether husband chooses standard dialysis or peritoneal dialysis, he will need someone who also knows safety and procedures. You can ask the nephrologist to suggest that your husband bring you to all meetings. I used to teach peritoneal dialysis to hospital-based nurses and it even took them some time and practice before they caught on. Once he learns the procedure, it’s relatively straightforward.
I just know that you two can learn this and be successful!

I need all the information there is.
We both went to a two hour meeting with the information about dialysis and transplants about 2 years ago. I went to all the transplant team testing and meetings with him. I went to some nephrologist appointments with him. I asked one or two questions about what symptoms to look for and what she uses to decide starting dialysis.
This not wanting me to go is a new thing. Can’t know if he is feeling fearful about what will happen, or if he doesn’t want me to worry ahead of time. We have had many recent conversations about what going on dialysis means.
Thank you for your concern. I am taking it to heart.

@jprust It could be a combination of things. Perhaps he is now mentally and emotionally preparing himself for dialysis, and thinking a lot how he needs to approach it. Dialysis is not a death sentence. My husband was on peritoneal dialysis for 5.5 years before his transplant. He continued to work full-time, and took his camping trips, etc. A lot of it all is a mindset. You do dialysis to live, not live to do dialysis.

As @becsbuddy said, you need to know what to do, just like he does. I truly believe he will find, in the end, comfort that you also understand what he is facing, and how to work with any difficulties that might arise, and it will be of comfort to him. There is nothing worse than feeling alone while dealing with a health issue!
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.