Can somebody tell me why CKD stage 3a or 3b is no big deal?

Posted by thenazareneshul @thenazareneshul, Aug 31, 2024

The knee-jerk prescription of every healthcare provider I see is for me to "take some Ibuprofen" even though I've been doing that consistently since 1990.

Then, surprise, I get told to not take any NSAIDs at all by my PCP. I look up his reasons, and it tells me I have stage 3b chronic kidney disease. To the best of my knowledge, the stage after 3b is stage 4, and that appears to be a big deal as far as the subject of kidney disease goes.

Not according to the Nephrologist I asked to see. She thinks it's all no big deal. She thinks I need to stop having trouble forgiving 30 years of PCP's knee-jerk just telling me to take Tylenol and/or Ibuprofen for what I now know is a whole raft of things wrong with my C and L spine, and "move forward" in my life. "Move forward into what?" Was my reply. She never answered that one. She even reminded me I am 70 years old, and just how long do I plan to live from now on? I told her I have religious issues with options such as donor kidney's and blood transfusions. It's like that wasn't a real problem that I need to consider among my options for this future I am supposed to just forgive past healthcare providers who knew my kidney's were gonna get shot, but hey, it avoids me taking opioids.

I'm seriously wondering if I've got a bad kidney specialist or what? Your thoughts on this situation would be most appreciated? Thank you.

Interested in more discussions like this? Go to the Chronic Kidney Disease (CKD) Support Group.

Profile picture for mrainne @mrainne

@jeannie85
Here we are a couple of years since the post you’re referring to. I’m now at eGFR 19 and on the inactive transplant list at NW Memorial in Chicago. I’m still wrestling with the anti rejection drug side effects. It could be a few years before I need a transplant and NW is a couple of hours from my house. I do know they are in the final stages of the “Tolerance Trial” started by Dr Leventhal from NW in Chicago and Drs from Stanford. The pilot phase in the 2010s showed 75-80% of kidney transplant patients could stop anti rejection drugs after a year. It is said to be complete by 2026-7. It’s basically a stem cell transplant from a live donor that matches. I was asked if I’d be interested in the trial…yes, absolutely! But my donor is getting tested in May…a long shot but possible!

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@mrainne I hope everything works out for you. I am 84 (85 in June) and I am not a candidate for surgery nor would I opt for it. I have been poked and prodded more than I care to have been and am done with that. I feel good and don't want to bring on any more problems. I am so happy these options are available for those who are able to tolerate them

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Well, my nephrologist appointment is about the same, they look at the computer and say things are stable - keep up the good work. Any questions? Feeling like I need my money's worth, I usually have some. In truth, I haven't seen the nephrologist in 2 years, it's really a practitioner. I've stumped him a couple of times with simple questions, such as, what antihistamines can I take? He had to look it up. My primary is also a practitioner, but seems very ON TOP of things. I've never stumped him. My thinking is he needs an upgrade to this title - MD, he's very good. He's also very cautious on use of meds to allergies, aches-pains, etc. He does NOT want to put stress on the kidneys - I respect his opinion. If my primary thinks - IT'S A BIG DEAL - at 3b. And, the real nephrologist I saw in the hospital thought it was a big deal. I'll go with that and do everything I can to keep it at 3b. That being said, I have low back issues. I try to stretch, exercise each day. Epsom salt bath helps. Sometimes I take Tylenol to take the edge off. I visit my chiropractor for adjustments - those help quite a bit. I've found maintenance adjustments every 6-7 weeks seems about right to avoid severe spasms. I've tried taking it to 8 weeks, usually results in enough trouble I can barely walk.

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Three weeks B/4 my kidneys failed and I went into a comma my Dr had ran routine blood tests and the results showed my kidneys failing and she even noted in the remarks about my kidneys needing to be retested. Three weeks later mine failed went into a coma. Thank God they had good kidney Dr's there or I would not have made it. They rate me as 3B on the scale and that DR that let this happen is still in practice. I guess somebody has to graduate at the bottom of the class. I am 74 and plan to live a lot longer, so no matter what that person told you fight on and stay strong.

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I am stage 3 kidney disease. It’s a problem as it pushes my blood pressure up. Otherwise I’m told u can live a full life’ just no anti inflamitories
And she does keep a close eye on me It’s a blood test I control the pressure with medication. So I don’t think it any big deal

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Perhaps it is because, according to my Mayo nephrologist who led the search for "us", I have a CDK known as ITG that only about 9 others (worldwide) have, that I go to the lab and meet with my "team" every quarter. This disease can be monitored either by watching kidney function with lab tests or with kidney biopsies (which are significantly more risky). They seem satisfied that this strategy works because my 24 hour urine protein has stayed below 5000 mg (normal is below 300 mg), my blood pressure is below 125/75, and creatinine is below 1.0. I don't really fall into any stage so it's recorded as stage 2/3. I was sent to Nephrology 5 1/2 years ago by the PA I was assigned to when my long time PCP retired. She noticed rising creatinine. Neither my local nephrologist nor the hematologist he sent me to see had heard of ITG. At my first appt after the diagnosis, I was told to expect to be on dialysis by 2024. Now he says that dialysis is not on his radar.

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Profile picture for thenazareneshul @thenazareneshul

The healthcare network is not into painkillers, so that's kinda out. I've had sepsis too, in 2017, not since. And right now, I'm recovering from yet another bout of Covid (with just finishing a course of Paxlovid). She didn't tell me a thing about what to eat or not eat, though I had learned not to load up on potassium, but only because it was way high with the bad results that got this front and center. I'm not sure what you mean by "on the list" except that sounds like a transplant list. I told her already I doubt I'd do such a thing. I already turned Orthopedic guys down back in 2014 about putting cadaver bone in my hips to make them recover. So, now I have avascular necrosis in the right hip. I had it in the left hip already way back then. There's so much wrong with my body, honestly, I think they're just waiting more for me to kick the bucket than helping me fix/correct what can be done.

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@thenazareneshul
I, too, had avascular necrosis. It was the most excruciating, painful, long-lasting year I have experienced! I don't remember why, but I had to wait a year to even talking about surgery. I ended up getting a hip replacement. It was the BEST surgery I have had, and I have had many. I had also had both knee replaced and back surgery. I was a special education teacher specializing in kiddos with autism and behavior disorders and the physicality of that positions I loved was very hard on my body. My joints were almost non-existent from wear and tear.

I was ready to do cartwheels down the hospital hallway after the hip replacement! I was 73 when I had the surgery. I can walk now without a cane or walker! Absolutely no pain. We all have to make our own decisions. This one was the best one I have ever made. Recovery was much faster than that after both of my knee replacements. Now I have organ issues and just had another back surgery two weeks ago. Our lives are what we make them.

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