Newly diagnosed with CKD (Chronic Kidney Disease) and terrified

I too have been diagnosed with stage 3 CKD. My doctor said she’d “been concerned about my kidneys for sometime”, but she never mentioned it to me during the previous 2 years’ visits. I am highly disappointed in her not making me aware much sooner, so that I could have began researching sooner to prevent progression of stage 3.

For whatever reason, some doctors will see a patient's kidney function deteriorating and, even when the patient questions the doctor about it, the doctor says they're "not concerned" about it. Many don't become concerned until stage 3 of kidney disease. In my case, when my primary care doctor mentioned my kidney function she casually referred to it as kidney insufficiency and moved on to other topics. (She never referred me to or suggested that I see a nephrologist.) I began to research on my own and became aware of the seriousness of the situation. The results of the next lab test showed that my kidney function had deteriorated even more. And here's the worst part. My doctor didn't even mention my kidney function after that test. I only found out the value by looking in the patient portal. I immediately self-referred to a nephrologist who informed me that I was already at stage 3b. I feel that so much precious time was unnecessarily lost. Needless to say, I never went back to that pcp again! We have to do our own research and advocate for ourselves.

It seems that an eGFR less than 60, still in the 50's, does not merit a nephrologist. In my experience that has been valid because it remained stable for decades and I had no concerns. But with a sudden drop I was immediately referred to nephrology.

As a side note I had to request blood tests before my next annual appointment. We have to take care of ourselves with the busy medical system we have.

Yes, it took a while for my kidney function to deteriorate, as my nephrologist saw that it had started years earlier. My eGFR was in the low 30's when I first saw a nephrologist. I did progress to stage 4 and remained stable at that level for years.
But I don't think doctors should say that they're not concerned when they see our function deteriorating, even if we don't yet need a nephrologist. I think that if we are made aware that our kidney function is deteriorating, (even before we need a nephrologist), we can begin to take measures to preserve function by doing things like starting a kidney-friendly diet to eliminate those foods that are hard on the kidneys and moving away from medicines that hurt the kidneys. I think that if we adopt those types of measures, that could help to slow the progression of the disease, remain stable, and preserve kidney function. Maybe I could have been taking measures sooner to slow the progression.
You are right we have to take care of ourselves.

Just want to clarify...when you say that you had to request blood tests before your next annual appointment, were you saying that the doctor didn't proactively order them and, so, the onus was on you to ask for them?

Im diabetic found out about 4 years ago i have stage 4 kidney disease, right now my numbers have stabled but creatine is always a little high. My kidney dr. Always tells me whats normal numbers to some dont mean your numbers are bad as long as you stay consistant

Any deterioration should be addressed. My eGFR was stable in the 50's for a long time, then dropped to 36 suddenly, so I then saw a nephrologist. But a stable 3GFR in the mid-50's or even low '50's didn't worry me that much and my doctors never mentioned it.

I have serious pain and was grateful to continue with my strong NSAID, sparingly, for a few more years. Noone told me to stop and noone thinks the drop in eGFR is from meds (I have lupus). But if I had had a more gradual drop, I would have totally eliminated NSAID's earlier. And taken the drop very seriously.

As for diet, my nephrologist recommendations are to push salt and protein, the opposite of what most kidney diets say. I needed to be bad off enough to get thorough testing (ultrasound, autoimmune testing, echocardiogram) to see if low blood pressure or low heart ejection fraction was contributing to a lower rate of filtration in the kidneys.

Muscle loss is another factor in the eGFR along with hydration, of course, so I get a Cysstatin C which is more independent of those factors.

@my44 I consistently have to proactively order them, the nephrologist tends not to. I was supposed to have a standing order when I first saw the MD a few years ago but it never happened. I will discuss this with her since I am having Reclast infusions which can be dangerous for kidneys. To be fair, I had blood tests a couple of months ago due to an MRI w/contrast order (didn't do it) and so maybe that is being used but I want a recent one since mine is so up and down.

@carolstrannahan Welcome to Mayo Clinic Connect! It seems you will find with many of us dealing with Chronic Kidney Disease [CKD], that our primary doctors simply do not have the knowledge necessary to help us manage it. Even my new primary told me, matter-of-factly, she doesn't know much about Kidney disease, and might be asking me for input!

It's disappointing, isn't it? But, good for you for advocating for yourself, and taking things into you own hands. As you read through the discussions here, you will find there are many bits of great information.
Ginger

I'm curious as to why your nephrologist pushes salt and protein. What's her reasoning since, like you say, it goes against conventional recommendations? I currently try to limit both.