Somebody tell me why CKD stage 3a or 3b is no big deal.

Posted by thenazareneshul @thenazareneshul, Aug 31 2:29am

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.

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@thenazareneshul

Now, see, this is why she, the nephrologist, isn't making sense. It turned out to be because of past labs also that it's fluctuating between CKD 3a and 3b. I'd already been taken off of all NSAIDs and then she's told me I can take the prescription for Meloxicam again. That was when my worst results came in! It's not like I don't want to take it, that was the best my pain has been for years. But I had stopped, because as I told her, "I'm not gonna just kill off my kidneys. I don't knowingly do things like that." So now, my daughter and I had allowed me 1 or 2 tabs a week (instead of 3 per day) as rescue meds. But I'm now to give Cymbalta a try, so if that helps the pain instead, that too is not an opioid. If it's safe for my kidneys. I do have high blood pressure. I have sinus tacycardia, and high cholesterol, and I'm obese from high Prednisone back in 2014-2015 for Polymyalgia Rheumatica. I've lost 30 obs of that but still have about 60 to go. And I take assorted other meds. I guess I'll just ask for a different nephrologist appt. Because I have to be able to ask about food restrictions, all she told me was not to eat large amounts of beef at any one sitting. I'd heard to cut the salt. That's really about it. Yet, it's good to find out my impression that I did not get good advice from her was right. I can move on with that, and her, behind me. I haven't had contrast in any imaging lately, so it's not that. Again, good to know. Thank you very much for the straight talk.

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In my experience a dietician is better at helping with diet concerns, as related to specific health problems. Physicians typically barely take a course in nutrition, during their training.
Also, every medication, prescription or non prescription. Effects something, sometimes many things. We have to assume they will affect the organs they warn about, rather than that they won’t. This is coming from someone with a history of chronic pain, from degenerative disease, many allergies to pain killers (prescription & non), & stage IV, metastatic cancer. I am no stranger to pain, & medication. Caution; Tylenol is hard on your liver.

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@thenazareneshul

The Tylenol comment by him is because of a fatty liver. The aspirin is about your kidneys, and it's all NSAIDs, not just aspirin. I was told, long ago, that it's alcohol AND Tylenol that are a danger (together) for livers. So, if you have major pain, I'd get a second opinion on that before cutting the Tylenol. I mean since you watch what you eat already. Too many doctor just assume a fatty liver means a lot of alcohol.

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I went into acute liver failure from Tylenol. No alcohol, no history of fatty liver, or any liver problems. It’s not just the combination.

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@thenazareneshul

The Tylenol comment by him is because of a fatty liver. The aspirin is about your kidneys, and it's all NSAIDs, not just aspirin. I was told, long ago, that it's alcohol AND Tylenol that are a danger (together) for livers. So, if you have major pain, I'd get a second opinion on that before cutting the Tylenol. I mean since you watch what you eat already. Too many doctor just assume a fatty liver means a lot of alcohol.

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Sorry but you seem to have misunderstood. My doctor said not to take Tylenol etc because of both the liver & kidneys. He indicated I was probably eating too many (refined?) carbs. I do not take any type of drug prescribed or otc for my arthritis pain. The fatty liver is not serious and in fact at my last checkup ( once a year) the enzyme (?) levels were good. I don’t drink alcohol except maybe 4 oz of wine at holidays so my doctor was not concerned about alcohol consumption. I have used cbc with thc ( bought online from a reputable company) and it helped with the pain, but it took 2-3 months daily before I got results. Too expensive for me now.

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@windyshores

Honestly I had stte 3A for decades and never paid any attention to it, and my doctor never mentioned it. In our 70's or even 60's it's pretty common. I think they should change it to "stage 1for >65 if eGFR is in the 50's!

My eGFR dropped from 55 to 36 (3B) a year ago and because I have lupus and high antibodies for scleroderma, I was sent to a nephrologist who sent me for heart, lung and kidney testing. Since then my creatinine based eGFR has fluctuated a lot. The sudden drop was the concern, not the actual value or stage. My Cystatin C, another type of eGFR, has been steadier and higher.

Hydration can cause lower scores. For me low blood pressure and muscle loss affect the creatinine based eGFR but not the Cystatin C, which has remained in the low 50's. Maybe you could hydrate and do a Cystatin C.

I have a friend with an eGFR of 18 and my mother was the same. We are not yet in dire condition with need for intervention apparently. I was told to hydrate and avoid NSAID's and maybe a dietician would help too.

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Mine was at 40 gfr, I started drinking water 18 oz five or six times a day, my gfr now is 70 to 80. I am 70 years old BTW

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@curley3

Mine was at 40 gfr, I started drinking water 18 oz five or six times a day, my gfr now is 70 to 80. I am 70 years old BTW

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Do you have a cut off time for drinking all that water, so that it doesn't keep up all night?

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@mydogsbestfriend

Sorry but you seem to have misunderstood. My doctor said not to take Tylenol etc because of both the liver & kidneys. He indicated I was probably eating too many (refined?) carbs. I do not take any type of drug prescribed or otc for my arthritis pain. The fatty liver is not serious and in fact at my last checkup ( once a year) the enzyme (?) levels were good. I don’t drink alcohol except maybe 4 oz of wine at holidays so my doctor was not concerned about alcohol consumption. I have used cbc with thc ( bought online from a reputable company) and it helped with the pain, but it took 2-3 months daily before I got results. Too expensive for me now.

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Thank you for clarifying that. I did misunderstand it.

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@thenazareneshul

Thank you for clarifying that. I did misunderstand it.

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I did try CBD products, my daughter is in her 20's and she knows those her own age who use it for arthritis too. So, living in Seattle, it was easy to try out. I can't tolerate THC though, at all. The CBD didn't help me, at all. It wasn't bad, it just didn't affect anything on me. I honestly can't even imagine not doing anything about the pains at all. I made such a stink when the doctor punctured my lumbar while putting in epidural steroids. He did order an MRI though that finally tells us what there is that needs treating and it's a bunch of stuff. I've got a referral now processing to Neurosurgery. We'll see what they can come up with.

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@gingerw

@thenazareneshul And here it is Sunday morning. Rough night last night, as we adopted two young rescue cats yesterday [one 6 months, one 4 months] They have an adjustment period to go through, that will definitely include how to interact with each other!

As for what to eat. Kidney.org is the website for the National Kidney Foundation. On the top tab you will find a drop-down that allows you to look at diet and nutrition. A lot of great information. Also, Renal Support Network rsnhope.org is a great site to go to. There are twice monthly support groups by Zoom, plus different groups that meet by Zoom [for example: diet/cooking, creativity, exercise] There is a lot of education to be had there. I have been with that group since 2015.

Moderate exercise, healthy eating [watch processed foods!], staying hydrated, reducing stress all can be to your benefit, not only with kidney disease but other health issues. We often laugh that when you need to look at what different diet plans to follow for different concerns, what is allowed on one list is not on the other!

Let me know if this is a help to you.
Ginger

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It's very helpful. I just saw the nephrologist, first time, last week. She gave me "kidney.org" too, on my exit summary papers, on leaving, but told me nothing about what or where I'd find anything lifestyle useful. I guess they say it so many times, they forget it's all new to us, when we begin. I appreciate it. Thank you.

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@mrainne

My GFR dropped from 27 to 21 recently. There are many aspects to maintaining healthy kidneys. Low salt, no NSAIDS, exercise, good diet, etc. I now know infection is a kidney killer and is not talked about enough. I had COVID, Norovirus, and a raging UTI that came dangerously close to full on sepsis. This was 2 weeks ago. I did not even know I had a UTI. A ambulance ride to the ED showed the infection was quickly turning to sepsis. It can happen in 12-24 hours. That’s how fast kidney function declines unless you address infection. My Nephrologist at Mayo said sepsis is the thing that scares her the most for her kidney patients. I’m saying be aware of the signs. Antibiotics cleared up the infection, but my kidneys suffered and we’re waiting to see if they recover. If not, I’m going on the list.
Kidney function often declines over time. The huge drops are what Nephrologists are looking for. If you can remain somewhat stable meaning up or down a few GFR notches. Potassium levels, proteinuria, calcium levels…there are many markers that ebb and flow. Nephrologists often don’t explain the complicated dance with many aspects to kidney function. Ask questions! Get to know more than GFR numbers. And understand what painkillers and antibiotics you can tolerate. You are your best medical advocate.

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@mrainne I saw that you didn't know you had a kidney infection, which is concerning if it is symptomless. What symptoms led you to call an ambulance?

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It's not a kidney infection that I had, or have. It's chronic kidney disease now. Meaning my kidneys are having trouble keeping up with the job of filtering that they're still supposed to do for me.

Oh, I think maybe you are replying to someone else's post, and I got it, instead. I haven't had to call an ambulance at all for years, and not at all for my kidneys.

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