Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

Posted by anet @anet, Oct 21, 2019

My husband who is 75 is in stage 4 kidney disease according to his gfr. His last Gfr was 27. That sounds terrible to me, but his nephrologist says he is stable. He is not diabetic. His creatinine is 3.2, albumin 4.1. Phosphorus, sodium, calcium, potassium are all normal. His blood pressure is controlled by medication. He exercises by walking one and a half miles every day. He has two heart stents and takes cholesterol medicine. He has shortness of breath on occasion, but still does all of his normal activities like light yard work, fishing, dining out, going to church activities. I do think he sits too much, but try not to nag. He is not good about eating healthy, but is getting better. Maybe I am just worrying too much. Would like to hear from others in this stage of kidney disease.

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Ginger, Volunteer Mentor | @gingerw | Mar 9 12:56pm

In reply to @ann63 "I would love to hear the complete recipe or the name of your salt replacement seasoning." + (show)

@ann63 I use Lawry's Salt Free Seasoning, or Mrs. Dash [now known as Dash], and actually buy it from Amazon in the large bottles. I always check the labels for ingredients, and have found these fit my dietary concerns. Years ago there was one that I really liked, but then I looked at the label only to find it had sugar as the first ingredient, and cornmeal as a filler! Nope, took that out of the pantry, but did keep the cool glass shaker jar!

I use the salt free seasoning in everything, the most recent was my homemade chicken soup last night.
Ginger

ann63 | @ann63 | Mar 9 2:06pm

Thanks

annbelle | @annbelle | Mar 10 12:13pm

In reply to @gingerw "@ann63 I use Lawry's Salt Free Seasoning, or Mrs. Dash [now known as Dash], and actually..." + (show)

my charts tell me no imitation salt either, used dash in many things
from meat to fish to soups.love it, no swollen hands or feet without salt

mrainne | @mrainne | Mar 10 12:35pm

Great thread. I'd like to change the topic for a moment. My eGFR is 27, last check. I've been lucky so far and not have had COVID-19 or the flu or food poisoning. What are the immediate actions to take for 4th stage CKD? Food poisoning is awful, I had it when my kidneys were healthy. Now, it could be a death sentence. And the flu, my husband has terrible flu, but I have not caught, it yet. I just went to convenient care to get tested for strep throat, COVID-19 19, and the flu. Waiting for results. The DR said you have to be careful about meds. Best to take Tylenol and drink lots of water (I do know that and rest). What prompts a stage 4 CKD person to go to the hospital for IV treatment? How do you know when kidneys are in a severe danger zone? Many people do not even know they're in kidney failure until they arrive at the ER. Thanks for your response.

annbelle | @annbelle | Mar 12 1:22pm

In reply to @ann63 "I would love to hear the complete recipe or the name of your salt replacement seasoning." + (show)

love mrs dash or dash

annbelle | @annbelle | Mar 17 12:56pm

In reply to @mrainne "Great thread. I'd like to change the topic for a moment. My eGFR is 27, last..." + (show)

stick with the kidney diet, small amts throughout the day,,i have homemade onion soup daily, even raw onions very good for kidneys, white bread only, lots of water and no falls, that made my kidneys go stage 3 to 4 in hospital, no more falls very important

Lynne Marie | @lbrockme | Mar 17 4:01pm

In reply to @annbelle "love mrs dash or dash" + (show)

I understand the concern with not knowing when kidneys are failing. I have had to learn my body's signals that aren't very evident. I also struggle with bacterial infections since one of my surgeries, that I don't get overt uti symptoms of.
Here's what I've done to help me try and get in front if it...
1) I note any increase in my fatigue level . That's one of my key tip offs. I call them red flags which have me take notice and step up my response...
I have fatigue anyway
but anything that steps
it up becomes a red flag for me.
2) loss of appetite
3) increase waking at night to pee
4) irritability
5) fuzzy thinking increase
6) swelling... legs , hands with tight rings, face, puffy eyes
7) change in urine color , clarity and if it has foam
8) oddly craving carbs or sugar unexpectedly
9) food makes me nauseous .. gagging
10) shortness of breath

When I notice these red flags , I do a home uti type test, if protein is increased , red blood cells etc, anything out of the normal range I follow up with call or email to my Dr. I use a test that is a simple urine test but test multiple factors
I also start monitoring my temp. Significant drop ( I drop low before a high fever) or anything over 99 , is a red flag for me .
My husband is also familiar with the red flags, and will notice and prompt me to pay attention . I sometimes just plug on... ignoring that I'm feeling worse the usual.
Oddly my dog now alerts me as well by smelling breath when things are going bad. If he starts smelling my breath , I pay attention and I start testing . ( usually test in morning and at night if I'm monitoring. Or if i have signifcant symptoms) He helps me catch it early as well.
After two hospitalizations in 18 months for sepsis with organ failure... I've been able to head off and keep out of the danger areas .
Hope this gives you some ideas. It's learning your body and just being present enough to take notice.
It actually helps me to relax a little more and live my life fully.

pakyun22 | @pakyun22 | Mar 18 10:03am

In reply to @annbelle "my charts tell me no imitation salt either, used dash in many things from meat to..." + (show)

I got swollen eyes though, can you use dash for the soup?
cant find soup ideas without salt.

pakyun22 | @pakyun22 | Mar 18 10:04am

In reply to @annbelle "stick with the kidney diet, small amts throughout the day,,i have homemade onion soup daily, even..." + (show)

I am stage 3b , very anxious
how do you make onion soup?
would you mind the seasoning share?

Rosemary, Volunteer Mentor | @rosemarya | Mar 18 11:35am

In reply to @pakyun22 "I am stage 3b , very anxious how do you make onion soup? would you mind..." + (show)

@pakyun22. I don't have a rcipe for onion soup, but did find these links that will start you in the right direction.

- Mayo Clinic Minute: Can extra salt hurt your kidneys? Feb. 16, 2024, 04:00 p.m. CDT
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-can-extra-salt-hurt-your-kidneys/
- Healthy Recipes from Mayo Clinic Healthy Living:
https://www.mayoclinic.org/healthy-lifestyle/recipes
.
Personally, I like to modify my favorite recipes. It might take a while to get used to the taste of less salt, but eventually you will get used to it. Do youy like to cook for yourself? Do you currently add salt when cookong?