Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?

Thank you for the info. I’m not sure whether I would have another Reclast or not. I have a telehealth appt with my regular PCP and will ask her if I need to do something soon. I have a follow up with the endocrinologist in October already scheduled but maybe I need to see her sooner. I don’t think there is much anyone does with this eGFR score, but I guess try to find the cause and stop the progression. It’s probably the Reclast, though.

Hello...I'm new to this site. My diagnosis of Stage 3B of kidney disease appeared on morning on my patient portal. I'm attempting to change my diet and would appreciate any sites or books that have been helpful.

She definitely needs to see Nephrologist. I had CKF for 30 years and 2 years ago a kidney transplant. She really needs someone that will know what medication will effect he kidneys. Antibiotics can severely damage kidneys. That is what made mine progress rapidly in the last 4 years before transplant. I hope this helps b

She does see a nephrologist but got no real input. Her endocrinologist said it’s ok based on her numbers but when you google Prolia and kidney disease there is a warning. There are such conflicting messages.

https://www.verywellhealth.com/foods-avoid-kidney-disease-5215344
https://www.health.qld.gov.au/__data/assets/pdf_file/0021/146442/renal-ckd.pdf
I find the above sites to be friendly on diets for CKD

@fattypatty Welcome to Mayo Clinic Connect! As you wander through discussions here, don't be reluctant to poke your head into the different ones and read what others are saying about their diet and foods they eat.

If you don't have a nephrologist, I would strongly campaign to get one. Yes, some doctors will tell you a specialist is not needed at this point, but most of us kidney disease patients will tell you it's time! The first thing is understanding the cause of your decreased function. The two main causes are uncontrolled/ untreated diabetes and high blood pressure. Other causes could be hereditary issues, life style issues, or medication side effects.

The key points for healthy kidney eating plans include: monitoring your sodium, potassium, calcium, phosphorous and protein intakes. Avoiding NSAIDS, using Tylenol type products only. Moderate exercise. Reduced stress. Adequate hydration. If the underlying issue is diabetes or high blood pressure, it is critical to get that under control.
Ginger

My PCP is running another creatinine and eGFR in 2 1/2 weeks. That will be one month after Reclast. She said the important thing is whether my kidneys recover after an infusion. (My average eGFR over the years had been 80, then dropped to 49 seven days after the infusion). A one time low score after an infusion is not so bad if it recovers, I guess.
But - had I realized, I would have asked for a delay in the CT scan with contrast. The one week scheduling between the two was done by two different medical systems. Yet again a reason we should be aware of our own health needs.

Hi Ginger, I know it has been years since you posted this, but could you mind telling me what the rare autoimmune disorder turned out to be in your case? Someone I love is going through something remarkably similar at the moment and the doctors are having trouble diagnosing what the autoimmune disorder may be.

I appreciate your help with this if you are still around!

@katiekind Welcome to Mayo Clinic Connect!

Yes, I am indeed still around. The cause of my kidney disease is Type III Collagenofibrotic Glomerulopathy. There is a fibrinous collagen buildup in the filtering components of my kidneys, essentially and eventually shutting them down. There have been less than 50 people diagnosed with this condition. At this time I am on daily dialysis, as of September 2022.

Autoimmune disorders are difficult to pin down, as they seem to mimic several conditions. Has your loved one been able to get to Mayo Clinic, or a large teaching hospital, for help? I know it can be frustrating to get it figured out. Keeping a journal of symptoms helps the medical team to narrow things down, I found out.
Ginger

Thank you so much for responding!!

I will look into this and see if it could be a match or if it leads me to a new pathway of research. I'm so sorry to hear that you are on dialysis, and yes figuring out which autoimmune condition he has, has been extremely difficult. He has not been able to go to the Mayo Clinic yet but im remaining hopeful. We are definitely keeping a journal and marking down all symptoms since there are so many of them! Thank you so much for your help!