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.

bettycll | @bettycll | Feb 18 5:33pm

In reply to @martychambers "@bettycll why are you taking Jardiance? Do you have the UTI problem with it?" + (show)

Hi Marty, I actually do not take Jardiance. I have just started on Farxiga. However, both meds indicate a possible UTI problem. I have NOT had a problem - and certainly hope I do not. Are you taking Jardiance?
As to WHY I take it... both my nephrologist and my cardiologist have recommended it. My nephrologist is anticipating that it will help with my CKD. My cardiologist is anticipating that it will help with my Diastolic Dysfunction (which is currently Grade 3). I decided to risk the potential side effects (hoping I would not experience them) to try to improve both my kidney function and my heart function.
At first, I was extremely hesitate to take either Jardiance or Farxiga. These meds are promoted for diabetes (one of the few things I fortunately do NOT have), and the side effects sound awful! However, I decided to try, if I could find a reasonable price, since I had two specialists encouraging it.

calabresegirl | @calabresegirl | Aug 5 4:55pm

Hello. I’m 66 yrs old. I had a my yearly basic metabolic panel done a few days ago. BUN & Creatinine were normal as was my glucose. However the eGFR has dropped from 97 to 76. I’m seeing my PCP tomorrow but I’m wondering if anyone has ever encountered a similar situation. Thank you

roz1955 | @roz1955 | Aug 5 10:51pm

Hi my name is Roz and I have stage 3a. I am 71. I also have high blood pressure and am pre-diabetic. What’s bothering most is the fatigue. I get so exhausted. I just started taking Lions mane and another supplement and buying sugar free foods to curb my sweet tooth. Glad I found this group.

dgjestson | @dgjestson | Aug 6 9:28am

In reply to @future "@kayabbott I was CKD patient for years. The kidney started declining due to a new medication..." + (show)

@future

@kayabbott
I was CKD patient for years. The kidney started declining due to a new medication I had to take. At that point my kidney was perfect. They stoped the medication immediately but was a bit late. However, I managed my diet and reduced protein so the creatinine went back to 1.5 in few weeks from 2.2. I was monitored by the nephrologist for 5 years , stable creatine at 1.5 so it was the best we could do. But in December 2020 (Covid year) I had a sudden fever not sure from what and used Tylenol and cold showers to reduce. But I went to the primary physician who did blood test and by the time I got back home the nurse called me and was frantic that my creatinine was 3.2 and asked me to go to ER at once to repeat the blood test. I did that and it was same number. They told me I am looking at kidney failure but I could not accept that. I read a lot online and found books of these words “stopping kidney disease” for an author who has been a CkD patient for 20 years at that time. He used a diet called Very Low Protein Diet (VLPD) and said it saved him from dialysis and he put his info to contact him. I did talked to him. In all cases I decided to switch to be complete Vegan meaning zero protein except plant based. That kept me away from dialysis for 2 years. Also switched my doctor to Mayo Clinic , who told me if I get sick even of the flu, for example , the kidney will fail completely. My eGFR at that time was around 15. So it was not possible to be given the meds you mentioned. I am not diabetic but have BP . She was right I ended in dialysis for 1.5 years and then transplant (thanks God). Dialysis is very advanced now , and can be done at home. So it was manageable.
I believe that if the kidney started to decline, we should not exhaust it with hard food like animal protein and dairy produce. We need to treat it much more carefully. I read on another blog at that time of stories that stage 3 can respond to diet in a good way .
I hope my story helped!

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@future Very helpful Kayabbott. I am most appreciative of you sharing your experience. I am now 86, alcohol-free, and my Stage 3 kidney disease has stabilized by paying close attention to avoiding dehydration and staying away from alcohol. I inadvertently reduced my red meat intake, and I think that contributed to my favorable condition.

lb0530 | @lb0530 | Aug 7 8:35am

Hi,

I am 87 and had a perfect eGFR of 90 or above until my right kidney was removed at age 85 for a "cancerous" tumor which turned out not to be. Dr. Did not do biopsy, because he was so "sure". That's a topic for another day.

I want to let you know about Renadyl, a probiotic I read about on Pub Med which helps kidney disease. I order some and have seen my eGFR rise from the 30s to over several tests to over 45 at last test. It's expensive, but it seems to help me. You can read about on the gov published stidies.

Susan76 | @hatetocook | Aug 9 4:09am

In 2023, when I was 73, I was diagnosed with CKD 3a (and Type 2 diabetes). It hit me like a ton of bricks. Once I carefully read what my PCP had written, my fear turned into anger. All he had written was: "Don't eat red meat: Eat fruit and vegetables. Don't eat sugar." I couldn't believe he provided no information, protocols, a blood glucose monitor for the diabetes or anything else. I took care of everything, but it's been very stressful, and I feel like I've aged 10 years. I spent a lot of time researching the illnesses and diets online and it didn't help in the least, because the diets, conflicted and I hate to cook. The only thing I understood from my reading was that I should get back to my ideal weight. So, I purposely lost 30 pounds in nine months. Months later, I got my first kidney stone. There have been two more, and each one was worst than the last. A urologist removed them through laser lithotripsy. I finally saw a nephrologist, and learned I should have been drinking 3 liters of water a day. I can only drink 2. We also discussed food, and I did make some changes, but I couldn't keep it up, because I hate to cook, and always have. And, these days, I can't stand most food. My doctor has since moved to a different state, and I'm seeing a new one. What was very disturbing was that with every kidney stone, my eGFR , which was 60, dipped about 35 points, and ultimately recovered after the laser lithotripsy procedure. But, then on April 29, I had another disastrous kidney stone debacle, and was sick for two months. On July 13, I went to the ER because I had a horrific stomachache, lost consciousness outside, and was hospitalized. It turned out that after 5 days, they did an endoscopy. I not only had gastritis, but my eGFR had dropped to 6. I was on so much pain medication that I wasn't aware of it until afterwards, and then I was terrified because I had no symptoms. They provided an IV Infusion for acute dehydration. I remained hospitalized for 8 days and then I forced them to let me go home. I was becoming so weak because I couldn't eat, and thought I would die if I stayed. I later learned I had lost ten pounds. I've been home for almost three weeks, and have been resting a lot, and walking with a walker inside, but I still haven't recovered. I can't drive, and barely can cook. I need to get this under control, so I can start walking my dog, and reclaim my life. It was a terribly traumatic experience, However, the good news is that my eGFR is now 74, although I need to understand why. I apologize for the length of this comment. But, after all of this time, I still don't feel I have gotten the help and support I need, nor can I come up with a diet that I can eat, and get all of this under control. I also can't gain back the weight I just lost. So, I am seeking your advice. In anticipation of that, thank you!

howardrlewis | @howardrlewis | Aug 9 7:10am

I simpathize with your experiences. That was traumatic! Losing the weight used a lot of self control. You understand the basics of good diet and you don't have to cook These foods are available at your Cub food or Walmart. My only suggestion is to exercise. Sorry, I know that is cliche. However, it is true. Go to your YMCA and get into it.

jesussister | @jesussister | Aug 9 11:41am

In reply to @calabresegirl "Hello. I’m 66 yrs old. I had a my yearly basic metabolic panel done a few..." + (show)

Jesussis
Hi. Your EGFR numbers are awesome. I'm dealing with low CKD Stage 4. My lab goals should be greater than 60. I've increased from 19 : 28 in 3weeks. Not there but continue to strive. My goal is to Tai Chi exercises and self massaging (feet, legs, lymphatic draining), insuring the blood flows to major organs (heart & kidneys) Geal in the blood. I've incorporated Hibiscus tea leaves daily. Continue healing and know you are not alone.

jesussister | @jesussister | Aug 9 11:43am

In reply to @jesussister "Jesussis Hi. Your EGFR numbers are awesome. I'm dealing with low CKD Stage 4. My lab..." + (show)

@jesussister
HEALING is in the BLOOD!!!!!

Ginger, Volunteer Mentor | @gingerw | Aug 9 3:43pm

In reply to @hatetocook "In 2023, when I was 73, I was diagnosed with CKD 3a (and Type 2 diabetes)...." + (show)

@hatetocook

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@hatetocook Welcome to Mayo Clinic Connect! What an ordeal you have been through!

If you place "renal meal plans delivered" into Google, you will find there are several sources that could possibly help you. And yes, many of us need to consider other health conditions as we come up with what will work for us. It's all a balancing act!
Ginger