Am I wrong to be concerned about my Stage 3a CKD?

Posted by quiltergirl2 @quiltergirl2, May 18 11:34am

My eGFR took a drastic drop from 44 to 36. My doctor seems to be very blasé about. I asked if I needed a Nephrologist, or go on a renal diet, she just says “you’re not there yet”. WHERE?? My father lost a kidney to a renal cell carcinoma, and his sister had nephritis I don’t want to get to that point of losing a kidney or needing dialysis. Am I wrong to be worried? Any opinions out there?

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

@quiltergirl2 Welcome to Mayo Clinic Connect!

Here is a link to a post I just did yesterday, to a fellow member about our diets and how to handle a new diagnosis: https://connect.mayoclinic.org/discussion/doctor-never-told-me/?pg=1#comment-1307736

Be your own advocate, and don't let a doctor tell you, "it's nothing to worry about"!
Ginger

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@gingerw

@quiltergirl2 Welcome to Mayo Clinic Connect!

Here is a link to a post I just did yesterday, to a fellow member about our diets and how to handle a new diagnosis: https://connect.mayoclinic.org/discussion/doctor-never-told-me/?pg=1#comment-1307736

Be your own advocate, and don't let a doctor tell you, "it's nothing to worry about"!
Ginger

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Ginger, thanks for the link. I’ve been dealing with CKD for a couple of years, it’s been frustrating…I am checking tomorrow for a specialist, in my area even though my insurance doesn’t require a referral most specialist do, but, I’ll check.

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@endelfam

Please please consult another doctor, preferably a nephrologist. I came up with a 34 eGFR in March 2024. I followed the directions of my doctor regarding medication and of my dietician whom he told me I should see. The eGFR readings slowly rose and one year later hit 65. Improvements are possible! I am still working to keep them down (or in this case up!).

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I asked my doctor via messaging if my meds could be adjusted or try new ones that don’t stress the kidneys or alter my diet and she didn’t even answer me. Yes time to find a new doctor and a nephrologist.

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That’s wonderful news for you. I just got a renal diet book plus an amazing chart from Amazon it has so much helpful information and a lot of the foods I love are on the good list, I’ll miss sweet potatoes and bananas but I’ll happily give them up for a better eGFR result.

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@endelfam

Please please consult another doctor, preferably a nephrologist. I came up with a 34 eGFR in March 2024. I followed the directions of my doctor regarding medication and of my dietician whom he told me I should see. The eGFR readings slowly rose and one year later hit 65. Improvements are possible! I am still working to keep them down (or in this case up!).

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What medications did your doctor prescribe?

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@howardrlewis

What medications did your doctor prescribe?

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He did not prescribe any medications. He cut my existing medication of Hydrochlorothiazide down from 25 mg to 12.5 mg. He sent me to a dietician and I have made definite changes in my diet. Basically, I am leaning towards a vegan diet now--not completely but meat has been sharply cut; eggs, cheese, and fish in limited amounts; and my overall consumption of protein is much lower. I also try to be careful with the amount of sodium I take in. If I have more problems in the future, I am assuming he would consider meds at that point.

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@quiltergirl2

Ginger, thanks for the link. I’ve been dealing with CKD for a couple of years, it’s been frustrating…I am checking tomorrow for a specialist, in my area even though my insurance doesn’t require a referral most specialist do, but, I’ll check.

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@quiltergirl2 Good for you! Be proactive, and get another primary care if they don't want to address your concerns. And while getting into a new nephrologist may take some time, get yourself on a cancellation list at that office if you can. If you have access to a pharmacist you trust, try speaking to them and get their take on your current medications and how they might be affecting your kidney function. Sometimes one won't be a concern, but a combination just might be!

Please let me know how you fare getting into a new PCP and nephrologist, will you? Oh, and as a fellow quilter, I love your screen name!
Ginger

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@howardrlewis

What medications did your doctor prescribe?

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Although I’ve asked about medication changes and dietary adjustments she’s done nothing but order an ultrasound of my kidneys which I’m having on the 29th. I’m looking for a nephrologist.

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@quiltergirl2

Although I’ve asked about medication changes and dietary adjustments she’s done nothing but order an ultrasound of my kidneys which I’m having on the 29th. I’m looking for a nephrologist.

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I see a nephrologist for what was originally diagnosed as CKD 3b then went to 3a. I’ve not been given any medication other than Olmesartan which was added to my other two BP medications. My eGFR fluctuates going into the normal range and then dropping substantially. I had a heart attack and had to have 5 stents placed. I too have asked about medications and nothing else has been prescribed. She has never spoken to me about diet. My major problem is that my protein intake my 24 hour urine is in the high 600’s. Nephrologist wants to do a kidney biopsy to check for lupus nephritis but my cardiologist will not let me stop my 2 baby aspirin per day to have it done due to the stents. I do have rheumatoid arthritis and see a rheumatologist. I’m just so frustrated because I feel something needs to be done to make sure I don’t have lupus nephritis. Anyone have any suggestions. I’m frustrated with every specialist I’ve seen for what seems to me to be inaction. I’m 70 years old.

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@endelfam

He did not prescribe any medications. He cut my existing medication of Hydrochlorothiazide down from 25 mg to 12.5 mg. He sent me to a dietician and I have made definite changes in my diet. Basically, I am leaning towards a vegan diet now--not completely but meat has been sharply cut; eggs, cheese, and fish in limited amounts; and my overall consumption of protein is much lower. I also try to be careful with the amount of sodium I take in. If I have more problems in the future, I am assuming he would consider meds at that point.

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Dilon't forget.
It's not only what we eat, but how much we eat.
Portion control is important..

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