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

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?

I was. Diagnosed with 3b CKD as a result of being obese all my life
Although I lost a tremendous amount of weight, kidneys remained damaged but stable

I was diagnosed with stage 3b CKD last year after damage from covid and norovirus. I have no risk factors for diabetes or other kidney disease, just bad luck from norovirus fever, dehydration, and elevated BP damaging my glomeruli and tubes. The only CKD symptom I have is fatigue; I used to bike 140 mi/week, now I do resistance and some aerobic workouts. I'm on Jardiance now, an SLGT2 inhibitor (I can't tolerate ACE such as Lisinopril). It has dropped my resting BP from 120/70 to 105/73, hopefully it helps my eGFR (42) and creatinine levels. My glucose and BUN have always been normal range, so not sure if getting rid of more glucose will help. Time will tell. Are others on Jardiance or other SLGT2 meds?

Diagnosed with CKD in 2023, recently learned I might have been borderline stage 5 at that time. Have since stabilized at 3b - eGFR around 38, Creatinine around 1.85 to 2.02. BP around 107/73 using Lisinopril. Also take a statin. Weight around 192 at age 68. There are about 3 theories on why this happened, but they don't really know for certain. Nor do they know how long I had been in decline, was perfectly healthy. My own thinking is a bout with Covid in Dec 2020 may have started all this. I've never taken the Covid vaccine, it wasn't available back then. Watch my diet closely, lots of fruit (berries, apples, pears), limit meat, more rice, quinoa, chia seeds and veggies. Fatigue certainly is an issue and itching that seems tied to food intake. If my protein intake exceeds my recommended level, it seems like the itching becomes a problem. But it could also be the other two Ps - potassium, phosphates. Just observations on my part. Last Nephro visit this summer, they put me at low risk for kidney failure for the next 12 months and a moderate risk in the next 5 years. They were pleased with my balance of diet, exercise and results.

@klp Hi Kelly and all. This new support group came just at the right time for me. In mid-August I had an emergency heart cath because of chest pain and a "wonky" EKG. It was determined that I did not need further treatment and went home. On day three following the cath I was having problems with my breathing. I have Mycobacterium Avium, colonized Pseudomonas, and bronchiectasis so I felt it had something to do with my lungs. We went to the ER and a CT showed Congestive Heart Failure, blood clots on both sides of the lungs. These conditions put me in ICU for six days and a telememtry room for one day. I was told I should make follow up appts with my primary, cardiologist and Nephrologist. I saw the discharge diagnoses #7. CKD, stage 2. What??? I had to look CKD up--didn't know that one. In the hospital discharge notes it said I am "chronically hyponatremic." Didn't know what that was either. OK, back to earth. They have me on UREA 15g twice a day. Does anyone understand about hyponatremic and this UREA product. The powder is awful. I've tried it in numerous liquids and it is still hard to take. I understand they have tablets and wonder if they are hard to swallow (too large). I see you have to take 8 tabs to equal one pouch of the powder. Any help or advice is appreciated. Thanks much. Faye

I am 86, diagnosed with kidney disease as a result of a reaction to an angiogram dye - my kidneys shut down completely. The surgeon decided to go ahead with a craniotomy and brain surgery as soon as they began to function. I have "progressed"in the last 19 years from stage 2 to 4A. I weigh 118. Because of this I am pre diabetic although the new reduction in kidney function may mean I have diabetes stage 2. Never been overweight. It has been a side effect of the kidney damage. Blood pressure is good: take amlodipine 2.5 mg twice a day. I know my MD thinks I should go on dialysis. I am refusing.

I am an 85-year-old male diagnosed with Stage 3 kidney disease, thought to be "age-related," although I have a long history of being "alcohol dependent." The alcohol use wasn't the typical alcoholic symptom (years of drunkedness, large quantities of hard liquor from hidden bottles), but a couple of beers daily, maybe 3-4 at an occasional festive occasion. It resulted in alcohol being in my system pretty much daily for 60 years! Now, I may have one beer every 3-4 weeks as a treat. Because of the change in alcohol use and efforts to avoid becoming dehydrated, there has been no change in my kidney function, and my primary physician monitors it via annual blood tests.

@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!

@future Thank you and the others, for your very helpful experiences and advice. The Jardiance has at least stabilized my eGFR at 42 (it takes about 6 mo for full effect). I do have a very controlled mostly FODMAP diet, low protein, probiotics and gluten free (celiac), no processed foods or alcohol, low sugar, lots of fiber, fruit, and veggies. I will be very vigilant of any future infections and I do have MGUS or SMM (oncologist thinks still MGUS) which increases my risk of kidney failure. I can't do high-energy aerobics now, but even walking and other moderate exercise is important for health and controlling stress. My husband is in phase 2 of prostate cancer now, radiation and hormones, so we have reached our use-by dates. Every extra year is a gift, even if our warranties have run out.

@klp I was diagnosed with membranous glomerulopathy in 2017. It is autoimmune and I'm stuck with it forever. It nearly killed me in 2017 due many pulmonary embolism, renal vein embolism, and vena cava emboli. The good news is that if I do not take any NSAIDS, it shouldn't rear its ugly head again. The bad news is I cannot take NSAIDS for pain management. I am now dealing with spinal stenosis, and opiods are the only thing I can take that helps at all.