GFR dropped 5 more points and I don't know why.

I question everything being recommended and consider the situation a continuing mystery. Since I don't have protein in my urine, it seems that the doc is trying to explain the eGFR with various theories that are not panning out! I have not changed my diet at all but have avoided NSAID's for many months and try to hydrate. Nervous about the Reclast without answers on the kidney issue!

Ginger thank you for the input. Being a retired dialysis nurse for 42 years this hits home. Had a visit with my primary care physician and his statement was you still could live another 20 years with those levels. I plan to continue my regimen and focus on the now one day at a time. My focus is staying abreast of my health issue.
Kathy

@windyshores Advocate to have your nephrologist and the prescribing doctor for Reclast, communicate with each other. For me, it is important that my hematologist oncologist and my nephrologist talk through phone calls/emails, coordinating my continued care. It has been a great thing to be part of. You are the hub of your care, and everything needs to be balanced.

Please let me know what you think about this? Do you think you may need to look for a different nephrologist/kidney disease opinion?
Ginger

I like both my doctors and they do communicate 🙂 Thanks!

I was told by the nurse at the Nephrologist’s office that I could see a dietitian but it most likely would not be covered by insurance. I am furious and plan to challenge the insurance company on this. I’m pretty sure a dietitian is covered once you require dialysis!!

@pwiley There is almost always a renal dietician on staff at the dialysis center a person goes to, whether they use in-center hemodialysis, or at-home peritoneal dialysis.
Ginger

Yes , I am aware as I was a hemodialysis nurse early in my career. The thing that bothers me is that you have to progress to that stage in order for the dietitian to be covered by insurance when they only real treatment available is diet during the early stages of CKD.

When GFR is falling consistently then goes back to over sixty, and there are two more blood draws in the next 14 months and it drops from 60 to 49, is there a way to find out what's causing this? I read the posts about scans and ultrasounds without dye. Aren't they useful for diagnosis? I wouldn't want to risk one with dye. When I managed an exercise business, a woman told me a scan of her heart with die caused her to lose 40% of her kidney function. If the scans without dye don't work, is there any other way to find out what is causing a significant drop in kidney function? Thanks

@macbarb0503 First, there are 2 basic lab tests for CKD. They are Creatinine eGFR and Cystatin C eGFR. The latter is the more accurate and most dependable for nephrologists. Cystatin C relates to all your cells while Creatinine involves muscle mass. Unfortunately, many insurance companies do not cover Cystatin C so many PCPs use the Creatinine lab test. Next, lab tests are useful as you want to look at your CKD labs over time, and not just one event. It gives you better consistency. I get my Cystatin C checked every 6 to 8 weeks and keep a spreadsheet for those values. Lastly, you can have a great or average Creatinine eGFR, but a poor Cystatin C score, and it is that Cystatin C that nephrologists care about the most. In a perfect scenario, most nephrologists would like to see both lab tests at the same eGFR level. In addition, heart disease, diabetes, and others are main contributors to CKD. It is chronic for a reason, and can possibly be separated from acute such as an accident. Your nephrologist should be able to pinpoint why you may have fluctuations over a period of time.

Thanks for the information. I called the nephrologist’s office, and was told they’ll look at my labs and call if they think I need an appointment. I think I need an appointment, after losing at least 11 GFR points in a short period of time. I’m in FL and am beginning to wonder if they wait until we’re ready for dialysis or a transplant where the big money is to bother with us. I’m elderly and won’t be getting a transplant. We don’t have enough doctors here for all the people. I just want to know what’s causing this, and how to slow it down. Don’t doctors try to diagnose the problem, prescribe medicine or anything? They just seem to want to ignore me.