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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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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 26 10:01pm
In reply to @mzacarias11368 "I have CKD 5. My doctor doesn’t really tell me about options. My gfr is 9..." + (show)
@mzacarias11368

I have CKD 5. My doctor doesn’t really tell me about options. My gfr is 9 and had anemia for a while. One day he said I need dialysis and then he said no dialysis. So confused…

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Hello @mzacarias11368 and Welcome to Mayo Clinic Connect. You know, some doctors find it hard to tell patients difficult news. But, the doctor may have stopped himself and realized he was being too up-front with the news. Is your doctor a nephrologist (kidney specialist)? What you may want to do is to follow the kidney and bladder support group. The discussion is really for Caretakers. But before you try to apologize, I’m glad you posted! Sometimes I just need to get out of my comfy chair! Here is the link to the Kidney and Bladder Support Group:
https://connect.mayoclinic.org/discussion/stage-3a-kidney-disease/. I’m sure they will be happy to answer all your questions!

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terry1976 | @terry1976 | Jun 27 9:11am
In reply to @mzacarias11368 "I have CKD 5. My doctor doesn’t really tell me about options. My gfr is 9..." + (show)
@mzacarias11368

I have CKD 5. My doctor doesn’t really tell me about options. My gfr is 9 and had anemia for a while. One day he said I need dialysis and then he said no dialysis. So confused…

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Is this a nephrologist MD? Can you get a 2nd opinion?

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jprust | @jprust | Jul 2 2:46pm
In reply to @starberry "He will make the right decision when it's time." + (show)
@starberry

He will make the right decision when it's time.

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I hope so. His nephrologist is having him do blood tests once a month now. She called this morning an hour after his labs. His creatinine is now 5.4 and his egfr is 10. I could not hear the conversation, only long silences and then him saying he would wait another month to see what happens. He said that a few times.
Does anyone know what symptoms I should look for that means it is time for an emergency?

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1 reply
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Ginger, Volunteer Mentor | @gingerw | Jul 2 2:57pm
In reply to @jprust "I hope so. His nephrologist is having him do blood tests once a month now. She..." + (show)
@jprust

I hope so. His nephrologist is having him do blood tests once a month now. She called this morning an hour after his labs. His creatinine is now 5.4 and his egfr is 10. I could not hear the conversation, only long silences and then him saying he would wait another month to see what happens. He said that a few times.
Does anyone know what symptoms I should look for that means it is time for an emergency?

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@jprust Nausea, vomiting, metallic taste in mouth, can all be signs that there is a crisis. However, not everyone experiences all these symptoms. Last December when I had a crisis, the only indication was nausea. I thought it was my stepson's cooking being too rich for my liking!

A rapid decline in activity or interest in daily life goings-on, shift in focus or desire to engage. I really hope you or his nephrologist can convince him it is time to think about starting dialysis. It has been proven that the higher your eGFR is when you start, the better chances for a steady outcome. I started at 14%.
Ginger

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2 replies
christinebarnett72 | @christinebarnett72 | Jul 2 6:07pm
In reply to @gingerw "@jprust Nausea, vomiting, metallic taste in mouth, can all be signs that there is a crisis...." + (show)
@gingerw

@jprust Nausea, vomiting, metallic taste in mouth, can all be signs that there is a crisis. However, not everyone experiences all these symptoms. Last December when I had a crisis, the only indication was nausea. I thought it was my stepson's cooking being too rich for my liking!

A rapid decline in activity or interest in daily life goings-on, shift in focus or desire to engage. I really hope you or his nephrologist can convince him it is time to think about starting dialysis. It has been proven that the higher your eGFR is when you start, the better chances for a steady outcome. I started at 14%.
Ginger

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My friend is at 12percent. What happens next?

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1 reply
jprust | @jprust | Jul 2 6:26pm
In reply to @gingerw "@jprust Nausea, vomiting, metallic taste in mouth, can all be signs that there is a crisis...." + (show)
@gingerw

@jprust Nausea, vomiting, metallic taste in mouth, can all be signs that there is a crisis. However, not everyone experiences all these symptoms. Last December when I had a crisis, the only indication was nausea. I thought it was my stepson's cooking being too rich for my liking!

A rapid decline in activity or interest in daily life goings-on, shift in focus or desire to engage. I really hope you or his nephrologist can convince him it is time to think about starting dialysis. It has been proven that the higher your eGFR is when you start, the better chances for a steady outcome. I started at 14%.
Ginger

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I would love to find that research. My husband says his research says it doesn’t make a difference.
I want to thank you for your support. I am having a difficult time with this as I feel like he is so stubborn.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 5 4:15pm
In reply to @jprust "I would love to find that research. My husband says his research says it doesn’t make..." + (show)
@jprust

I would love to find that research. My husband says his research says it doesn’t make a difference.
I want to thank you for your support. I am having a difficult time with this as I feel like he is so stubborn.

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@jprust Here is an article from the National Kidney Foundation which has a lot of very useful information. As you can see, they say at about 15% we are severely compromised in getting all the toxins out of our bodies. I know for me, starting dialysis at 14%, it was still a few weeks before I could realize a difference. Our bodies learn to accommodate the declining function of our kidneys, and we don't realize how much we are feeling poorly until we are feeling better. Hope that makes sense!

Face it, getting to the dialysis stage is a big deal, and even now many doctors downplay it. I think those who push for it at higher eGFR levels are those who have a family member/friend and saw it firsthand, or have concrete testimony from patients.
https://www.kidney.org/atoz/content/dialysisinfo
And this excellent article from My Health Alberta [Canada] explains things well, too! Expand their bullet points to read some great information!
https://myhealth.alberta.ca/Health/Pages/conditions.aspx?hwid=abo2705
Ginger

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Mentor
Ginger, Volunteer Mentor | @gingerw | Jul 7 6:27pm
In reply to @christinebarnett72 "My friend is at 12percent. What happens next?" + (show)
@christinebarnett72

My friend is at 12percent. What happens next?

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@christinebarnett72 Welcome to Mayo Clinic Connect. If your friend is at 12% kidney function, I hope they are being followed by a nephrologist on a monthly basis? Has there been discussion yet about dialysis, or any dialysis education. There are several options to decide on.

Many time, a person is not aware of how poorly they are feeling when their kidney function starts to fail, if it is due to Chronic Kidney disease. Our bodies are miracle machines, and learn to accommodate our declining function, especially when it is slow. Kidney disease brought on by uncontrolled diabetes or high blood pressure [the two leading causes of CKD] can be helped first by getting those condition under control as much as possible. Having a team effort with diet, exercise, medication if needed, and solid education is all a plus.

Tell us a bit more about your friend's circumstances, so we may be able to give more pointers?
Ginger

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1 reply
christinebarnett72 | @christinebarnett72 | Jul 7 6:45pm
In reply to @gingerw "@christinebarnett72 Welcome to Mayo Clinic Connect. If your friend is at 12% kidney function, I hope..." + (show)
@gingerw

@christinebarnett72 Welcome to Mayo Clinic Connect. If your friend is at 12% kidney function, I hope they are being followed by a nephrologist on a monthly basis? Has there been discussion yet about dialysis, or any dialysis education. There are several options to decide on.

Many time, a person is not aware of how poorly they are feeling when their kidney function starts to fail, if it is due to Chronic Kidney disease. Our bodies are miracle machines, and learn to accommodate our declining function, especially when it is slow. Kidney disease brought on by uncontrolled diabetes or high blood pressure [the two leading causes of CKD] can be helped first by getting those condition under control as much as possible. Having a team effort with diet, exercise, medication if needed, and solid education is all a plus.

Tell us a bit more about your friend's circumstances, so we may be able to give more pointers?
Ginger

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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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2 replies
christinebarnett72 | @christinebarnett72 | Jul 7 6:45pm
In reply to @christinebarnett72 "He's my ex-husband actually and he I think is in total denial I think his nephrologist..." + (show)
@christinebarnett72

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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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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