1. < Chronic Kidney Disease (CKD)
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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.

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christinebarnett72 | @christinebarnett72 | Jul 7, 2024
In reply to @christinebarnett72 "He has a skin change he has a nose bleeds he's nauseous and vomiting all the..." + (show)
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He has a skin change he has a nose bleeds he's nauseous and vomiting all the time he's very very tired and it just seems like they're doing nothing for him

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He's actually at 10%

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christinebarnett72 | @christinebarnett72 | Jul 7, 2024
In reply to @christinebarnett72 "He's actually at 10%" + (show)
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He's actually at 10%

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I would give him a kidney but I don't know how to go about that

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Ginger, Volunteer Mentor | @gingerw | Jul 7, 2024
In reply to @christinebarnett72 "He's my ex-husband actually and he I think is in total denial I think his nephrologist..." + (show)
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He's my ex-husband actually and he I think is in total denial I think his nephrologist isn't offering him anything in fact Robert told me today that his doctor supposed to let him know when it's time to go on dialysis I don't understand it

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@christinebarnett72 He may need to take a hard stand with his nephrologist and tell him it is time to talk about dialysis. At 10% he could start dialysis at any time. And in my experience, starting dialysis when you are in crisis and percentage keeps dropping, is not good. You say he is not feeling well, vomiting, and these are classic signs he needs help now! If his nephrologist isn't aware of how he is feeling, or doesn't seem to care, he needs a different nephrologist, in my humble opinion. I wouldn't want him to have to go to an emergency department because his doctor wasn't listening to him!

The transplant process can be confusing. Here is information from Mayo Clinic on kidney transplant that may be helpful to you: https://www.mayoclinic.org/tests-procedures/kidney-transplant/about/pac-20384777 Please read it through.
Ginger

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Becky, Volunteer Mentor | @becsbuddy | Jul 7, 2024
In reply to @christinebarnett72 "He has a skin change he has a nose bleeds he's nauseous and vomiting all the..." + (show)
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He has a skin change he has a nose bleeds he's nauseous and vomiting all the time he's very very tired and it just seems like they're doing nothing for him

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@christinebarnett72 From reading your comments and @gingerw comment, I believe it is time to find s newnephrologist who can help him better.
Also, when your former husband is very sick, take him to the ER. Let them evaluate things and recommend a nephrologist.
Your ex is very lucky to still have you in his life. Would he allow you to go to doctor’s appointments with him? Do you think he would talk to you about the possibility?

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laurie6 | @laurie6 | Jul 8, 2024

Denial is not so unusual, I’m finding out.

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sultanvr | @sultanvr | Jan 20 1:27pm
In reply to @gingerw "@jprust What many of us will tell you, is that chronic kidney disease usually sneaks up..." + (show)
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@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

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@gingerw Hi Ginger, I realize this post is a handful of years old. It prompted a question, when you say dialysis helped you recover some kidney function, does that mean that your kidney can start working a little better? Like your EFGR can come up a bit? Thank you.

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Ginger, Volunteer Mentor | @gingerw | Jan 20 6:50pm
In reply to @sultanvr "@gingerw Hi Ginger, I realize this post is a handful of years old. It prompted a..." + (show)
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@gingerw Hi Ginger, I realize this post is a handful of years old. It prompted a question, when you say dialysis helped you recover some kidney function, does that mean that your kidney can start working a little better? Like your EFGR can come up a bit? Thank you.

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@sultanvr I started dialysis with an eGFR of 14%. Many patients start at a lower value, sometimes 10 or lower. I had started on treatment for multiple myeloma Aug 2021, and was really getting in to the side effects of that. My kidneys were continuing to decline, as was my quality of life, so I decided to go ahead with dialysis to give me every fighting chance. Dialysis helps remove toxins, and is a treatment but not a cure. We have seen that by monitoring things closely, and being proactive, my eGFR is up to 16-17% at times. For my thinking, any little bit helps.

Without a doubt, I can tell you overall I am functioning better. July 2024 we changed out my dextrose-based dialysate solution to a maltose-based solution, for a long dwell. This has benefited me by also bringing some of the cancer markers down, given me more energy and quality of life.
Ginger

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sultanvr | @sultanvr | Jan 23 4:12pm
In reply to @gingerw "@sultanvr I started dialysis with an eGFR of 14%. Many patients start at a lower value,..." + (show)
Profile picture for Ginger, Volunteer Mentor @gingerw

@sultanvr I started dialysis with an eGFR of 14%. Many patients start at a lower value, sometimes 10 or lower. I had started on treatment for multiple myeloma Aug 2021, and was really getting in to the side effects of that. My kidneys were continuing to decline, as was my quality of life, so I decided to go ahead with dialysis to give me every fighting chance. Dialysis helps remove toxins, and is a treatment but not a cure. We have seen that by monitoring things closely, and being proactive, my eGFR is up to 16-17% at times. For my thinking, any little bit helps.

Without a doubt, I can tell you overall I am functioning better. July 2024 we changed out my dextrose-based dialysate solution to a maltose-based solution, for a long dwell. This has benefited me by also bringing some of the cancer markers down, given me more energy and quality of life.
Ginger

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@gingerw Thank you for sharing.

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beanbag | @beanbag | Feb 6 10:39am
In reply to @jprust "More than a year later. My husbands egfr is now at 12. The nephrologist called after..." + (show)
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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.

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@jprust
I find myself approaching these decisions sooner rather than later. After another year or so how is your husbands condition, how does he feel about his decision with the benefit of hindsight
Best wishes

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vstates66 | @vstates66 | Feb 7 9:27am
In reply to @gingerw "@sultanvr I started dialysis with an eGFR of 14%. Many patients start at a lower value,..." + (show)
Profile picture for Ginger, Volunteer Mentor @gingerw

@sultanvr I started dialysis with an eGFR of 14%. Many patients start at a lower value, sometimes 10 or lower. I had started on treatment for multiple myeloma Aug 2021, and was really getting in to the side effects of that. My kidneys were continuing to decline, as was my quality of life, so I decided to go ahead with dialysis to give me every fighting chance. Dialysis helps remove toxins, and is a treatment but not a cure. We have seen that by monitoring things closely, and being proactive, my eGFR is up to 16-17% at times. For my thinking, any little bit helps.

Without a doubt, I can tell you overall I am functioning better. July 2024 we changed out my dextrose-based dialysate solution to a maltose-based solution, for a long dwell. This has benefited me by also bringing some of the cancer markers down, given me more energy and quality of life.
Ginger

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@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.

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