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

@fdixon63 I hope you can find answers; as we age and our health becomes more complicated it can take time to sleuth what works best for us. Below is a link to hyponatremia and UREA. It is also good to check on whether you are on any drugs that might interact with UREA (https://www.drugs.com/drug-interactions/urea.html ). UREA also comes in Lemon-Lime and Orange flavors, in case that helps. Stage 2 CKD is more common with aging, and diseases; I suspect regulating your water intake is critical. With my Stage 3b I drink a lot of water, but in small volumes throughout the day. Did you doctor(s) or nutritionist mention electrolyte solutions (I used to be an athlete and these were important for quick calories and replacing salts lost with sweat). https://www.aafp.org/pubs/afp/issues/2004/0515/p2387.html https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2811070

I first was told about my Stage 2 kidney condition in 2005. Immediately I went to a strict renal diet plan, even though my doctors told me there was no need to. In my mind, yes, there indeed was a need! It is my firm belief that doing that, advocating for myself and my situation, kept me off dialysis until 2022. The underlying cause for my CKD is Type III Collagenofibrotic Glomerulopathy, where the filtering components of my kidney are being blocked off by fibrin. It is an autoimmune disease, less than 50 people in the world have been diagnosed with it.

In Aug 2022 I started Peritoneal Dialysis with an eGFR of 14. Each month there are labs taken to ascertain how my system is doing. I am also a blood cancer patient [multiple myeloma], so all this has to play well together. I am very blessed to have a great hematologist-oncologist and nephrologist, who speak together and share information, creating the best healthcare plan for me. Unfortunately, I am not a good candidate for a stem cell transplant for the myeloma. This would have been a precursor to trying to qualify for a kidney transplant. So, I am on dialysis for the rest of my life.
Ginger

@future
Hi,
My eGFR just went down and I am wondering what the authors name is of the book “Stopping Kidney Disease”?
Thank you

I am 70 years old. Started with kidney problems at 19 secondary to an injury.
- hematuria (blood in urine)
- abused ibuprofen for 30 years
- CKD diagnosis at age 65
- Radical Nephrectomy January 2024
- eGFR ranges from 30-45 since January 2024.
- On two blood pressure meds
- My diet since January 20/; has ranged from perfect vegetarian to I don’t care I’m having some ice cream.
- I walk 2-5 miles four days a week. Lift weights
- and “pray without ceasing”
We are all on our individual journeys, love, laugh and give your best. Blessings.

I just got home from seeing my nephrologist and realize I need to take stage 3 ckd very seriously. I’m a 74 year old male, have been stage 3 since at least 2020 and have done very little about it. Last visit (3 months ago) my kidney function was about 39%, today at 30%. I would like to hear from people who have been there to get some consensus of a healthy direction to take, including how to get more knowledge on the subject. At this point I don’t know even what questions to ask. A little about me; generally good health, still work daily (construction), had severe COVID in 2021(9 days in icu), not vaccinated, daily fatigue, daytime drowsiness, heartburn 2 months, constipation, and other things. I have no idea which of these applies. Comments appreciated. TK

@kerbowski
I have CKD since 2015. Had one kidney removed in 2024. I had a eGFR of less than 40 with 2 kidneys, my latest test was 51 eGFR with only one kidney. I read, research and ask questions to my physicians. These facts may help you. They are taken from NIH (National Institute of Health) and National Kidney Foundation. I encourage all of us to do research. It is not as daunting as in times past. You can now do research via the internet in your own home.
- 37 million adults have CKD. Most who have it do not even know it.
- Less than 2% of those diagnosed with CKD lead to kidney failure.
- You have greater chance of having CKD if you have diabetes, high blood pressure, heart disease or a family history of kidney failure.
- To control CKD you must 1. Control your blood pressure 2. Control diabetes if you have it. 3. Reduce or stabilize the amount of albumin lost in the urine, by losing weight and reducing sodium intake. 4. Manage your diet. Consult a dietician who is a renal expert. If you have a referral from your doctor Medicare will help pay.
Please pay attention to this, it is not a death sentence. You can lead a full and productive life. So, take care of yourself, become knowledgeable, do your very best. Blessings.

I was recently diagnosed with ckd stage 3b…. I want to do everything I can to stop it from progressing….

@dougr19 Thank you for your really encouraging words. I’m just now getting educated about ckd. From your advice, I’m actually doing those 4 things. I have lost 15+ pounds in 2.5 months. Also at the recommendation of a friend I’m doing a kidney cleanse with an assortment of cold pressed juices I get in my hometown. What are your thoughts on this? It is a 3 day, 1/2 day each day where I consume (4) 12oz. Bottles of fresh pressed juices each day one a different cocktail.

@iamjutta1 Welcome to Mayo Clinic Connect! Good for you for wanting to take an active approach to dealing with that recent diagnosis of CKD Stage 3b.

There are several discussions threads already in this kidney disease support group, that you can wander through and see how other members are handling their day-to-day lives. First and foremost, I would recommend you find out about and learn about what might be contributing to your CKD. Untreated diabetes or high blood pressure? Those need to be addressed to minimize further damage to your kidneys. Side effects of other medications? What can your medical team do to change meds and achieve the same desired outcome? As for what you can do, almost all of us with CKD say diet plays a critical part, and something we can control ourselves. Stop NSAIDs like Alleve and aspirin, resorting only to acetaminophen [like Tylenol] to lessen stress and damage to your kidneys. Research good food plans for you that minimize sodium, red meat, calcium, phosphorous, potassium, sugar. Many of us have additional dietary restrictions due to other health/cultural concerns, and must craft a diet that is best for us. Get good rest, and do moderate exercise, mindful of stress.

That said, it is not impossible. But will take work on your part. I have no doubt you will find a sense of accomplishment as you take on this challenge! Please tell me more about you, if you'd like.
Ginger

I’m 50+ years diabetic and have had hypertension at times. 20 years ago (2005) I was going through a pre transplant evaluation (pancreas) and was told that I had mild - moderate kidney dysfunction. I wasn’t given a stage #, alphabet letter or told an eGFR. I had heard of simultaneous kidney / pancreas transplant so I inquired about that. I was told that I did not need a kidney transplant. I had a “pancreas alone” transplant. That had a great run for 11 years.
In 2016 the pancreas function had started declining and so was my kidney function. I had another pre transplant evaluation for simultaneous kidney / pancreas transplant. By then I had learned about stages of CKD, creatinine, BUN, eGFR, other renal panel labs….. My eGFR was bouncing between 14 - 42. This time the pre transplant evaluation team told me I didn’t need a pancreas transplant but would eventually need dialysis &/or a kidney transplant. I was approved and accepted for kidney transplant but was listed inactive because my eGFR wasn’t quite bad enough at the time (< 20). My nephrologist said that I was mainly stage 4. Currently my eGFR is 34.
I have a great endocrinologist and nephrologist. I take care of diabetes and CKD with diet, BP meds, high tech devices such as a continual glucose monitor (CGM) & an insulin pump. I’m lazy and dislike exercise except for walking; so I try to do that when I can motivate myself. (I wish I had a dog!) Last but definitely not least is that I’m a Christian believer. My faith, prayer and faith community are absolutely essential for support.