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

@klp
My name is Terri. My kidneys have always been healthy. January ’25 I was diagnosed with PMR was put on 20 mg prednisone daily. In March I was having chest pains and the ER diagnosed anemia and pulmonary hypertension. My Creatinine was 1.7, BUN was high and eGFR was about 45. In April, a failed stress test on my heart showed HFpEF - heart failure with preserved ejection fraction. Basically the bottom of my heart is working too hard. My cardiologist wanted me off the prednisone quickly, but that is a slow process.
Meanwhile, my kidneys continued to get worse. Was referred to Nephrology in AUGUST after I pointed out to my PCP the rapid decline in kidney function. Ultrasound showed no damage…yet. My last eGFR was 48, but the Cystain-C said it was 30. Nephrology believes it’s a blood flow problem, not to worry, see you in 6 months.
NOT TO WORRY? Sure, I’ll get right on that.
Not asking for medical advice, but would this rapid decline in kidney function concern anyone else?
Terri

@rocksology , Terri greetings. I hear / feel you. If tests &/or a provider identifies something that isn’t quite right but follows with “not to worry” I’m inclined to have a hissy fit.
I have found that many PCP’s don’t have a lot of training or experience with CKD. They may not take an eGFR in the 40’s seriously. On the other hand a specialist / nephrologist who sees the whole spectrum of kidney issues from perfect to total failure may not take an eGFR in the 40’s seriously either.
I’ve found it helpful to get my provider to take a personal perspective and have asked “if this was you what would you do?” I did this early on when I met my nephrologist. He had told me I had some kidney disfunction but didn’t need to worry about it for a long time (2008). In 2016 he told me I would need dialysis &/or a kidney transplant at some point. He said it was a matter of when not if. At that time my eGFR was bouncing between 14 - 42. My Dr. said that I was mainly Stage 4 CKD. It was then that we came to a good understanding and agreement of my goals for my kidney health. My Dr. explained kidney labs, got me information on dialysis & transplantation, referred me to a renal dietician, gave me information & a recommendation on hydration. At present I see him or his PA twice a year for follow up. My eGFR is 34.

I am starting to think I got CKD due to covid vaccine, but I did get sick in Mexico a few years ago. What started as an acute disorder and a rapid decline in kidney function has become chronic. 67 yo. I had 70 gfr; it dropped to 40 within a year, and now, 2 years later, it is at 18. Biopsy suggests IGA proteins. I have a good BMI no weight issues, work out, no signs of diabetes now, eyes, teeth, and ankles have always been good. Eyes strangely changed color from brown to blue 5 years ago.

Hello - I joined MCC because of my CLL, which was diagnosed nearly 2 years ago. However, I then found the heart rhythm group due to my AFib. Now I have discovered the Chronic Kidney Disease support group. I was diagnosed with CKD (IgA Nephropathy) about 38 years ago via biopsy. Through the years I have seen my GFR steadily decrease. Right now it is about 25. At one time when I was in the hospital for heart issues, my GFR was down to 12. Among other things, I was dehydrated. My nephrologist said she has never seen someone bounce back so well! A recent blood test showed my GFR to be 45 - she had me repeat the labs, certain that could not be accurate! The new results were in the 30's. Anyway, I am holding my own, while managing multiple other issues. I am a few weeks short of my 80th birthday (very hard for me to believe), and I hope to celebrate many more without going on dialysis. My nephrologist follows my BP closely; I am on a remote monitor, and I get calls if things are not as they should be. I am careful to stay well hydrated and not to eat much protein - particularly red meat. I NEVER touch an NSAID, no matter how badly I ache. If any other doctor prescribes a medication, I always check with my nephrologist before taking anything. Right now she would like me to start on Jardiance or Farxiga. I am working with multiple agencies trying to obtain it for a reasonable cost because it is just unafforable. I also take Irbesartan and Metoprolol. Like Rocksology, I was diagnosed with HFpEF. A recent echo called it Stage 3 Severe. Hopefully, Jardiance or Farxiga will help that, as well. Many friends have discovered they have CKD - however, no one has had it as long as I have - so I hope that I am an example that someone can LIVE with CKD. Obviously, I recognize that things can change in a heartbeat, but for now - while my kidney function is not good - I am stable. I am glad I have discovered this support group.

Wife's GFR was 15 in 2024, now is 41. Doctors told her she had to be on dialysis when her GFR was 15.
Her kidneys are doing fine now. Here is what we think changed her GFR. She got off all OTC she was taking and only took one woman's vitamin and one probotic each day. Within 902 days, her GFR was 31.

We were told by a doctor that the kidneys were having to work to hard with all the OTC vitamins, etc., she was taking. She saw the benefit, although her own doctor did not think her getting off OTC had anything to do with her GFR increase.

Her GFR is 41 now. She also began to drink lemon/water combination with a pack of sweet and low each day. About 16 to 32 ounces. She buys lemons and I squeeze them and she keeps the juice in the frig.

She believes her getting off OTC stuff...she was taking all kinds of vitamins and minerals, as the reason for her GFR to increase and believe the lemon juice and water she drinks daily as another benefit to her GFR.

She was schedule to go on dialysis when her GFR was 15, as the doctors told her, your kidneys will not get better. But she proved them wrong. Hope this might help others out there.

Should say "Within 90 days" not 902 days. Could not find a way to correct the post, so I am posting again this corrrection

@pick44 Welcome to Mayo Clinic Connect. I am glad to hear your wife found a solution that works for her. Staying hydrated and keeping a sound renal plan are two of the most important factors in kidney health!
Ginger

Hi, I just joined. I was diagnosed with stage 3 five years ago at 56 Gfr. Its dropped to 44 stage 3b. I showed more concern than my PA. She referred me to a dietitian to watch my salt 200mg or less per meal. I think I was in denial until my numbers kept dropping. Now I am worried. I have an appt for an ultrasound and with a nephrologist in 3 weeks. What are good some questions to ask him? Thanks, Donna

Hello My name is Andrea G. I've been diagnosed with Stage 4 Kidney disease. It's been 3 years. I also have secondary metastatic breast cancer. I've been on this journey since August 2025. So I've got a lot going on. I just completed radiation 5 sites. Spine, lower skull, right hip, and rib. I'm on Target therapy regimen. I'm taking Verzinio chemo pill. Unfortunately, it's very hard on my system. Causing diarrhea, dehydration which affects my creatinine and my GFR labs. I am an advocate for my health. So I'm choosing the right foods for my healing. Also, trying to use a process to detox my body.
If anyone is experiencing these symptoms I'd love to chat. I pray we all healed. Take care and be healed.

@bettycll I buy my Farxiga from Canada, costs me $135 for 90 days, including tariffs & shipping. My Medicare Part D plan was $800 because of my deductible.