1. < Kidney & Bladder

Diagnosis of CKD: What are your disease management tips?

Posted by cath2 @cath2, May 3, 2023

High, I have recently become aware that my EGFRs over several years, at least, have been in the 50’s. I am 69 and my IM said as long as I drink a lot of water this can be managed and that he takes many things about my health into consideration of that. I had another test following up since I was asking about it and indeed, when focusing on drinking a lot of water my EGFR went up into the 70’s.
Should I be more concerned and see a nephrologist? Is this a common problem in Dx and management of CKD or am I overthinking this. Thx!

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cath2 | @cath2 | May 3, 2023

Obviously, I meant Hi! Autocorrect and I struggle! 🙄

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 3, 2023

@cath2 Welcome to Mayo Clinic Connect. Kidney disease, and chronic kidney disease in particular, can be tricky to diagnose. I have included a link here from the American Kidney Fund that talks about the basics of it all. The two main culprits of CKD are diabetes and uncontrolled high blood pressure. Other factors can include medication responses, lifestyle choices, and genetic factors. Unfortunately, many of us have found that our general physicians are simply not educated enough on the finer points of kidney disease to address it properly.

If I were in your shoes, I would consider seeing a nephrologist, for a comprehensive workup, and determination of kidney disease. A specialist is important to obtain accurate care if you indeed do have CKD. You may or may not need a referral from your primary care doctor, depending on your insurance. Reaching out to a teaching hospital, large university hospital, or to Mayo Clinic, are ideal options. Does this sound doable for you?

https://www.kidneyfund.org/all-about-kidneys/chronic-kidney-disease-ckd

What other questions do you have for me at this time?
Ginger

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2 replies
cath2 | @cath2 | May 3, 2023
In reply to @gingerw "@cath2 Welcome to Mayo Clinic Connect. Kidney disease, and chronic kidney disease in particular, can be..." + (show)
@gingerw

@cath2 Welcome to Mayo Clinic Connect. Kidney disease, and chronic kidney disease in particular, can be tricky to diagnose. I have included a link here from the American Kidney Fund that talks about the basics of it all. The two main culprits of CKD are diabetes and uncontrolled high blood pressure. Other factors can include medication responses, lifestyle choices, and genetic factors. Unfortunately, many of us have found that our general physicians are simply not educated enough on the finer points of kidney disease to address it properly.

If I were in your shoes, I would consider seeing a nephrologist, for a comprehensive workup, and determination of kidney disease. A specialist is important to obtain accurate care if you indeed do have CKD. You may or may not need a referral from your primary care doctor, depending on your insurance. Reaching out to a teaching hospital, large university hospital, or to Mayo Clinic, are ideal options. Does this sound doable for you?

https://www.kidneyfund.org/all-about-kidneys/chronic-kidney-disease-ckd

What other questions do you have for me at this time?
Ginger

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Yes! That was what I was thinking. Thanks for confirmation we should explore further with a nephrologist. We live in NC near Charlotte.

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collegeprof | @collegeprof | May 4, 2023

@cath2

This is a disease that has many components, especially water. For many of us in Stage 3 or 4 of CKD, our bodies suffered from heart or diabetes issues. If you don't believe you have any underlying problems or suffer from cardiac or diabetes conditions, it certainly would be advisable to be proactive and see a nephrologist and take the necessary kidney lab tests. Among all the test factors, Cystatin C test is the most accurate while eGFR looks at your creatinine levels and assigns a calculated numerical factor. Good luck!

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cath2 | @cath2 | May 4, 2023

Thank you. Both my husband and I have some cardiac issues and see a cardiologist. I have SVT’s. Both my parents passed with CHF.

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windyshores | @windyshores | May 5, 2023

I discovered this week that my EGFR has gone from 50/55 to 36 and 42. I got the 41 after drinking a lot of water. My blood pressure runs low. I have a long standing diagnosis of lupus but mainly just get sick in the sun. My blood sugar was kind of high at 156 two hours after a pretty low carb meal (daughter has type 1; I am thin so didn't expect type 2). I have been on Tymlos, a drug that builds bone and can cause kidney stones but should be okay for folks with kidney disease. I made an appointment with a nephrologist. Something funny is going on.

REPLY
2 replies
windyshores | @windyshores | May 6, 2023
In reply to @windyshores "I discovered this week that my EGFR has gone from 50/55 to 36 and 42. I..." + (show)
@windyshores

I discovered this week that my EGFR has gone from 50/55 to 36 and 42. I got the 41 after drinking a lot of water. My blood pressure runs low. I have a long standing diagnosis of lupus but mainly just get sick in the sun. My blood sugar was kind of high at 156 two hours after a pretty low carb meal (daughter has type 1; I am thin so didn't expect type 2). I have been on Tymlos, a drug that builds bone and can cause kidney stones but should be okay for folks with kidney disease. I made an appointment with a nephrologist. Something funny is going on.

Jump to this post

ps not saying I have diabetes- but going to start watching it.....concerned about kidney decline in one year

REPLY
flow | @flow | May 6, 2023
In reply to @gingerw "@cath2 Welcome to Mayo Clinic Connect. Kidney disease, and chronic kidney disease in particular, can be..." + (show)
@gingerw

@cath2 Welcome to Mayo Clinic Connect. Kidney disease, and chronic kidney disease in particular, can be tricky to diagnose. I have included a link here from the American Kidney Fund that talks about the basics of it all. The two main culprits of CKD are diabetes and uncontrolled high blood pressure. Other factors can include medication responses, lifestyle choices, and genetic factors. Unfortunately, many of us have found that our general physicians are simply not educated enough on the finer points of kidney disease to address it properly.

If I were in your shoes, I would consider seeing a nephrologist, for a comprehensive workup, and determination of kidney disease. A specialist is important to obtain accurate care if you indeed do have CKD. You may or may not need a referral from your primary care doctor, depending on your insurance. Reaching out to a teaching hospital, large university hospital, or to Mayo Clinic, are ideal options. Does this sound doable for you?

https://www.kidneyfund.org/all-about-kidneys/chronic-kidney-disease-ckd

What other questions do you have for me at this time?
Ginger

Jump to this post

Hello. I agree that most Drs are not as up to date on CKD as is needed to dispense advice. My experience, is that there are not enough nephrologists to address the huge numbers of folks diagnosed and so most will not agree to see you unless you are Stage 4 or 5.

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Mentor
Ginger, Volunteer Mentor | @gingerw | May 6, 2023
In reply to @windyshores "I discovered this week that my EGFR has gone from 50/55 to 36 and 42. I..." + (show)
@windyshores

I discovered this week that my EGFR has gone from 50/55 to 36 and 42. I got the 41 after drinking a lot of water. My blood pressure runs low. I have a long standing diagnosis of lupus but mainly just get sick in the sun. My blood sugar was kind of high at 156 two hours after a pretty low carb meal (daughter has type 1; I am thin so didn't expect type 2). I have been on Tymlos, a drug that builds bone and can cause kidney stones but should be okay for folks with kidney disease. I made an appointment with a nephrologist. Something funny is going on.

Jump to this post

@windyshores Good for you, to get an appointment with a nephrologist. When is it? My suggestion is to sit down and write out the questions you have, and note the symptoms you are experiencing. Don't leave out what might appear to be "things that don't matter", since they just might in the big picture!

Beyond my kidney disease and blood cancer, I was diagnosed with Systemic Lupus way back in 1988. There is no telling how that has affected my system over the decades.

Please let me know how that appointment goes, okay?
Ginger

REPLY
1 reply
windyshores | @windyshores | May 6, 2023
In reply to @gingerw "@windyshores Good for you, to get an appointment with a nephrologist. When is it? My suggestion..." + (show)
@gingerw

@windyshores Good for you, to get an appointment with a nephrologist. When is it? My suggestion is to sit down and write out the questions you have, and note the symptoms you are experiencing. Don't leave out what might appear to be "things that don't matter", since they just might in the big picture!

Beyond my kidney disease and blood cancer, I was diagnosed with Systemic Lupus way back in 1988. There is no telling how that has affected my system over the decades.

Please let me know how that appointment goes, okay?
Ginger

Jump to this post

I am mainly concerned about the rate of decline. And drinking a lot of water didn't do much for the GFR.

I had a lupus diagnosis in 2001. This spring I am very very sun sensitive and get headache, tingly paresthesias, diarrhea, lung and joint pain. Some years are gentler. Going to throw in a rheumatologist too.

Thanks for the response.

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