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.