Why is CKD Stage 3A downplayed? Am I over reacting to be concerned?

Many docs do not diagnose it, when a healthy patient has had stable numbers over the years…. Some people’s #s are in their own okay range….also, some have a mix of good and not so great kidney #s…..the best thing anyone can do early on is check your blood tests to see which #s are needing attention (creatinine, potassium, phosphorus, albumin, protein, calcium, ratios )—and address them with some simple dietary changes. There’s a lot of info out there, including AI fake huckster videos (beware)…. Diet and exercise are something we can do for ourselves….no need to cut out too much protein if your numbers are stable… it does get a bit more complicated when it comes to balancing the needs of multiple conditions…that’s where a doctor’s interpretation is helpful…..1 last caution: many supplements are not good for the kidneys, be careful ! Read posts here and you will get good info. Meanwhile, don’t get alarmed, just educate yourself and adjust a few dietary items for now and check your #s with your doc.

@nycmusic ps docs don’t generally give meds to early stage CKD.

I had the same reaction when I received an email from my PCP notifying me that she had referred me to Nephrology for Stage 3 CKD. When I responded she noted that my creatinine had been rising for a number of years and was now approaching the upper limit of normal. As it turned out, it was complicated. I spent months getting tested starting with an ultrasound, more lab tests, PET scan, and eventually a kidney biopsy. It was a while ago so I don't remember which tests were abnormal but the biopsy was apparently so unusual that three pathologists were consulted. The last one, at Mayo Clinic in Rochester, made the diagnosis of immunotactoid glomerulapathy (ITG) that relied on electron microscopy.

When her report reached my nephrologist, he forwarded it to me and scheduled an appt. As I remember, one of the first things he said (perhaps in the email to which the report was attached) was that he had never heard of ITG. Next, he referred me to Hematology. It was very scary.

I started searching the online medical journals at the college where I'd taught. ITG affects about 100 patients worldwide. There are two common subtypes: ITG with lymphoma and ITG with myeloma. As you might guess, I was tested for both. And found negative. There are about 10 patients worldwide with this idiopathic ITG. I've "met" four through a FB group.

The hematologist recommended treatment using a MAB that cures lymphoma which, for those patients, means the end of ITG. That failed for me. Next I had treatment for myeloma since ITG myeloma patients experience the remission/end of ITG symptoms. Myeloma is not curable like lymphoma is.

That myeloma treatment was, let's say taxing. I lost over 30 pounds in a few months and was always exhausted because one of the treatment drugs, dexamethasone, has the side effect of preventing sleep. Sometimes I couldn't sleep for five days. I had weekly treatments. I often had a driver because I was so sleep deprived. The treatments stopped when I developed peripheral neuropathy, which is another side effect.

Three and a half years later, the ITG has slowed. I am tested every three months and worry each time that the hematologist will recommend more debilitating treatment.

But I have beat the odds. My nephrologist said he expected me to be on dialysis three years from the diagnosis. I read reports that said that ITG patients generally survive three years once on dialysis. My diagnosis was almost six years ago. I am considered Stage 2/3a based on creatinine levels.

So, apparently, there are tests that determine when CKD should be addressed. I just had them again yesterday. I see the nephrologist on Monday and the hematologist 10 days later. Fingers crossed. To my amateur eye, nothing is alarming.

Hi,
I know they don't even say anything at 1 or 2 stage in my experience. I found out I had hypertension in Sept. 2021 by using a store blood pressure machine! I do not think I had it very long at that time. I was in a stressful, on your feet, sales job. I would swell in my calves and ankles. I was told it was salt. I was put on meds to control bp. Meds did the trick! Lisinopril 20mg, HCTZ 25mg(diuretic) and Rosuvastatin (cholesterol) in Nov. 2021 I changed to a desk job in insurance. Dec. 9th I was 56. That is when I was told, that I was CKD 3a. It was a blessing not a curse. View it as a wake up to pay more attention to your diet, weight, overall health. I am monitored every 3-4 months. Been at the same level going on 5 years. No nephrologist. No dietician, nothing. I cut myself back on drinking alcohol(social drinker) infrequently now. I quit smoking Nov. 2021. I do still vape nicotine. Not a lot. Desk job=weight gain over 4.5 years. I am going down. Anyway, I have researched kidneys for the past 3 months every day. For 3 months, almost zero red meat. Eating more clean food. Not processed. Low or no sodium, sugar(kind of have a sweet tooth) not diabetic, low potassium, phosphourus, vitamin d, less calcium. You can manage and stay in CKD STAGE 3A for the rest of your life! Unless you hit Stage 4- no nephrologist. If a dietician is offered. Take it, I wish I had back then. You will be great! Always hydrate! I would have something on ice- water, tea, soda all day long. More fluid pushes toxins out through the kidneys. It is a shock to hear you have a chronic disease. It is unnerving and you feel like why wasn't I told sooner. I turned 60 and am still going! You will be too-5, 10, 15 etc years from now. Yes, aging sucks, because organs age but it is part of it. Plus you have 2 kidneys!! Good luck, I hope this helps you. Terri

Yes, it is downplayed ! Zero doubt about that. Why ? In my opinion, because there is nothing that they can do. It is a chronic disease that has no cure, that can only be slowed, if you are lucky. This fact alone demands that it be recognized early on, diagnosed early and you be informed. The only real tools you have to slow it are diet, and blood pressure and blood glucose control.

It is a silent killer. Before anyone seems to wants to take notice of it, you have to almost be ready for dialysis. I have Stage 3 a , and I simply didn’t care what my PCP or my urologist (who didn’t even know what a Cystatin C blood test for kidney function was when I asked him about having the test done) said about a referral. I self referred to a Nephrologist. He did a lot of blood work, said things were stable and come back in one year. That was great news, mentally. Why the heck my other doctors were so “opposed” to that visit with the Nephrologist is beyond me. With this chronic disease, I have learned you have to help yourself - most PCP are so deluged and/or see you as just a number that YOU have to make it happen. Best luck to you on your journey with this disease and the idiots you will meet along the way.

@jeanh73 Welcome to Mayo Clinic Connect! As you browse through the discussion here, you will notice that many members say the same thing, not being told by their doctor until later.

Chronic kidney disease can have one or several base causes. The most common is high blood pressure, or diabetes. Beyond that, genetic factors, medication side effects, lifestyle, or other health conditions may play a part. In my case, my then-PCP told me I was Stage 2, and not to worry. Yeah, right, Uh-huh. At that point, in 2006, I put myself on a renal diet, against the advice of my doctor. They thought my kidney disease was a result of having lupus. It wasn't. For me, it is because of a rare autoimmune condition. Being proactive allowed me to stay off dialysis until 2022!

As @nycmusic and @quirky9 posted, being your own advocate, and stepping up to make changes in diet and lifestyle can go a long way to bettering your health. Chronic kidney disease can sneak up on us. We go merrily along our way, feeling pretty "okay". For the most part, CKD is quiet and our body gets accustomed to slight changes, that build up over time.
Ginger