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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starberry | @starberry | Jun 1 4:52pm

You cannot push a person to make a decision when they are not ready. He is still working through his choices.

jprust | @jprust | Jun 1 8:00pm

In reply to @starberry "He will make the right decision when it's time." + (show)

I think so. And I have to respect his autonomy. My sister’s husband refused treatment for tongue cancer and died two years later-a bad death. My sister said they had many conversations about it, but she had to respect his choices. No one really knows what choices they will make until they have to make the choice.
This has been exhausting.

Ginger, Volunteer Mentor | @gingerw | Jun 1 10:49pm

In reply to @starberry "You cannot push a person to make a decision when they are not ready. He is..." + (show)

@starberry Welcome to Mayo Clinic Connect! Have you or a family member had to face this decision? I would be interested to know, if you are open to sharing!
Ginger

ococean09 | @ococean09 | Jun 4 8:49am

Sign up with Davita for the online kidney course. It’s free and just a few hours in line or in person. We got a book we printed and it helped answer questions and explained things well. They also give you lots of nutrition information and recipes I am a caregiver and did the course twice online. Got a lot more out of it the second time I did it since I understood it better.

jprust | @jprust | Jun 5 9:56am

Update: Hubby has decided to ask the nephrologist about placing the tubes for PD. She told him it could be placed one day and he could start dialysis the next. That is different than what people are saying on here. He has a pacemaker so he doesn’t want to take a chance on needing an emergency chest port.
Each week brings more information and decisions.
I hope everyone on this site is getting the support they need.

Ginger, Volunteer Mentor | @gingerw | Jun 5 5:41pm

In reply to @jprust "Update: Hubby has decided to ask the nephrologist about placing the tubes for PD. She told..." + (show)

@jprust The surgery should be done by a vascular surgeon. They will have the best information for you, regarding how to handle this before and after the PD catheter placement.

You're absolutely right, each week is a new exposure to decisions and information! Sending you good vibes for a successful outcome.
Ginger

mnjp0623 | @mnjp0623 | Jun 14 11:00am

I just had liver transplant Mayo Clinic is a life saver Feeling great thanks you for the support It really helped

jprust | @jprust | Jun 15 9:03am

In reply to @gingerw "@jprust The surgery should be done by a vascular surgeon. They will have the best information..." + (show)

Update: Hubby asked me to go with him to his appt with nephrologist. Hubby’s gfr is 12 now after 3 tests and his creatine is 4.5 to 4.9. His BUN is 31.
The nephrologist was very good about explaining everything. She said he is in Stage 5 now and that without a transplant dialysis is probably needed in the near future. Right now he does not have many symptoms and she is monitoring blood work every month. When she thinks he will need dialysis within 2 or 3 months then he will get a heart evaluation and then a PD tube placed. Then a week training at the main hospital. When he starts PD at home then we have to go into the city once a month for dialysis monitoring there. Sioux Falls is 2 hours drive one way from us. And the winters can get bad.
But one step at a time.
It feels very real now, but we are still hanging in there. She was surprised that hubby was still mowing the lawn and doing yard work and cooking several times a week.
Thanks to whomever is still reading my long message. This is a good place to vent.

Funcountess | @funcountess | Jun 23 6:39pm

In reply to @gingerw "@jprust What many of us will tell you, is that chronic kidney disease usually sneaks up..." + (show)

Ginger I don’t know where you get the energy you do have.
Everything you do indicates a normal life and not dialysis.
Whatever you are doing. Works.

mzacarias11368 | @mzacarias11368 | Jun 26 6:10pm

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…