1. < Chronic Kidney Disease (CKD)
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Moderator

Chronic kidney disease (CKD) support: Introduce yourself and connect

Posted by Kelly, Moderator @klp, Sep 26, 2025

Welcome to the chronic kidney disease (CKD) support group on Mayo Clinic Connect.

This is a welcoming, safe space for anyone living with chronic kidney disease, at any stage of the journey. You’re invited to share your experiences, ask questions big or small, and offer encouragement to others walking a similar path.

Please take these steps to participate in the group:
- Follow the group.
- Browse the topics.
- Use the group search to find answers to your questions.
- Introduce yourself.

Whether you’re adjusting to a new diagnosis, managing CKD long-term, or caring for a loved one, you’ll find support, shared experiences, and practical advice here.

Let’s chat. Why not start by introducing yourself? What is your experience, or your loved one’s experience, living with CKD? (i.e., stage, how long since diagnosis, how it’s managed)?

Do you have a question to ask or a story to share?

Interested in more discussions like this? Go to the Chronic Kidney Disease (CKD) Support Group.

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llewis4579 | @llewis4579 | 5 days ago

I have congestive heart failure and ckd Stage 3b. My blood pressure has been really low for a couple of months. Can ckd interfere with bp?

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ckvhk | @ckvhk | 5 days ago
In reply to @klp "Welcome to the new support group dedicated to CKD. I’d love to hear from some of..." + (show)
Profile picture for Kelly, Moderator @klp

Welcome to the new support group dedicated to CKD.

I’d love to hear from some of you who have shared your experiences before: @sharlea1313, @katherine65, @abritabroad, @rene123, @maggieinfp, @njwrstlr, @gwladj76, @sallylynn, @ellerbracke, @lbrockme, @kidneyq13, @ggr, @swbwnwsictis1, @lightgoddess, @shotta609, @annc999, @mrainne, @lovely83, @gingerw, @loriel, @cehunt57, @ldrlaw, @popcorn369, @margarethill, @thenazareneshul, @drcoco, @kndaustin71, @susangail53

Check it out. There's new group on Mayo Clinic Connect dedicated to CKD (https://connect.mayoclinic.org/group/chronic-kidney-disease/). Your discussions have been moved to this new group. Be sure to follow the group to get notified of new posts.

So let’s get connected. Take a moment and introduce yourself. If you’ve been managing CKD for a while, what’s one tip or coping strategy that has helped you? And if you’re newer to this journey, what’s a question you’d like to ask the group?

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@klp
My name is Cathy. I was diagnosed with CKD from lab work in the ER. I checked my old lab work and my kidney function has been decreasing for years and my doctors didn’t notice. Right now I don’t have any symptoms but I keep waiting for them to develop.

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1 reply
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annbelle | @annbelle | 5 days ago
In reply to @ckvhk "@klp My name is Cathy. I was diagnosed with CKD from lab work in the ER...." + (show)
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@klp
My name is Cathy. I was diagnosed with CKD from lab work in the ER. I checked my old lab work and my kidney function has been decreasing for years and my doctors didn’t notice. Right now I don’t have any symptoms but I keep waiting for them to develop.

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@ckvhk hi, i never had symptoms, so try to get on and enjoy life, drink lots of water to keep the kidneys moving, add lemon if u wish. do not dwell on it, stress can make anything worse.

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rcamillo72 | @rcamillo72 | 4 days ago

At 72 I am on my 3rd month of Jardience. Is this my last hope before my doctor orders dialysis

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nycmusic | @nycmusic | 4 days ago

Hi, not new to the kidney group—but just got blood test results (l get cancer surveillance every 3 months)—by going on what i call a modified kidney diet, not ultra strict…..my eGFR went up 10 points and my creatinine came down some…still had my beloved salmon, roasted turkey (less and smaller servings), did more plant protein, less dairy, more kidney friendly veggies/fruits, care with salt, sugar , and potassium, hydrating even more…also, i got IV hydration after CT with contrast….i share this to prove it can be done even in a few months …the challenge ahead is to keep on it carefully, and not mess up my good work. My primary doc said some careful modification would help, as she didn’t want me to do it to the extreme, creating other health issues that I don’t need. …wishing everyone better kidney health !

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1 reply
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JenN | @jennifern | 3 days ago
In reply to @cehunt57 "Jen, @jennifern welcome to Mayo Clinic Connect. High blood pressure and diabetes are the two most..." + (show)
Profile picture for Cheryl, Volunteer Mentor @cehunt57

Jen, @jennifern welcome to Mayo Clinic Connect. High blood pressure and diabetes are the two most common causes of kidney troubles. It is good that you are seeing your PCP soon. Maybe your blood pressure meds are due for some fine tuning. You could also ask for a referral to a dietician. Someone who knows renal nutrition could be helpful to you. Most of us with CKD avoid sodium. It can raise blood pressure. Many of us limit protein especially red meat because it is hard on kidneys. Learn about kidney function labs such as eGFR, creatinine, BUN, blood and urine protein. There are others like calcium, phosphorus, potassium and oxalates are good to find out about too. If you have trouble with any of these a renal nutritionist can give you food lists of high and low quantities of these substances to be mindful of. A new diagnosis like this can be stressful and may have something to do with your headaches. CKD itself doesn’t usually have noticeable physical symptoms. Mention the headaches to your PCP. Get your questions answered. Knowledge is power. I’ve had CKD since 2005. You can live long and well with it. You are not alone.

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@cehunt57
Thank you so kindly for your advice, it was very helpful.

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Mentor
Ginger, Volunteer Mentor | @gingerw | 3 days ago
In reply to @nycmusic "Hi, not new to the kidney group—but just got blood test results (l get cancer surveillance..." + (show)
Profile picture for nycmusic @nycmusic

Hi, not new to the kidney group—but just got blood test results (l get cancer surveillance every 3 months)—by going on what i call a modified kidney diet, not ultra strict…..my eGFR went up 10 points and my creatinine came down some…still had my beloved salmon, roasted turkey (less and smaller servings), did more plant protein, less dairy, more kidney friendly veggies/fruits, care with salt, sugar , and potassium, hydrating even more…also, i got IV hydration after CT with contrast….i share this to prove it can be done even in a few months …the challenge ahead is to keep on it carefully, and not mess up my good work. My primary doc said some careful modification would help, as she didn’t want me to do it to the extreme, creating other health issues that I don’t need. …wishing everyone better kidney health !

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@nycmusic Thanks for the reminder that we are the captains of our destiny. We need to be our own advocates, and do the needed footwork. Watching what we are doing, going slow, and paying attention to how we feel is critical.

I needed to read your uplifting words today!
Ginger

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nycmusic | @nycmusic | 3 days ago

Hi Ginger, reading your posts here and some others as well definitely gave me the grit to do something for my kidneys….Your hug is much appreciated, will remind me to stay on track. We celebrate our wins best by staying focused.

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honeyp | @honeyp | 3 days ago
In reply to @klp "Welcome to the new support group dedicated to CKD. I’d love to hear from some of..." + (show)
Profile picture for Kelly, Moderator @klp

Welcome to the new support group dedicated to CKD.

I’d love to hear from some of you who have shared your experiences before: @sharlea1313, @katherine65, @abritabroad, @rene123, @maggieinfp, @njwrstlr, @gwladj76, @sallylynn, @ellerbracke, @lbrockme, @kidneyq13, @ggr, @swbwnwsictis1, @lightgoddess, @shotta609, @annc999, @mrainne, @lovely83, @gingerw, @loriel, @cehunt57, @ldrlaw, @popcorn369, @margarethill, @thenazareneshul, @drcoco, @kndaustin71, @susangail53

Check it out. There's new group on Mayo Clinic Connect dedicated to CKD (https://connect.mayoclinic.org/group/chronic-kidney-disease/). Your discussions have been moved to this new group. Be sure to follow the group to get notified of new posts.

So let’s get connected. Take a moment and introduce yourself. If you’ve been managing CKD for a while, what’s one tip or coping strategy that has helped you? And if you’re newer to this journey, what’s a question you’d like to ask the group?

Jump to this post

@klp
I am a 73 olg female with ckd stage 4. In 2013 I ha my left kidney removed,needlessly. There was a water cyst on it and the dr told me that a needle biopsy would be dangerous so it would be better to remove it. After all, "you can live with one kidney".
In 2022,I was rushed to emergency
because my other kidney failed. I had dyalisis at a center for about a month after spending month in the hospital doing dyalisis.
I have spent the last 4 years balancing above efgr of 15until last week.
My nephrologist (that I placed my trust in) retired in December. My new nephrologist is young and maybe a competent ,but I have little confidence that she would be there in an emergency.
With lower numbers , I had the pd catheter inserted on 9/17. I had a lot of pain in my lower abdominal for the first few days, but better today.
Sorry this is so long, but feeling a little down and looking for a place with kin souls to vent with and ask questions.

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2 replies
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kimimarc8899 | @kimimarc8899 | 3 days ago

Hello there,

I was diagnosed with CKD shortly after my liver transplant at Mayo Phoenix on 2/16/2025. Feeling alright, just being monitored every 4-6 months at this point. Trying to stay positive!

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