Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?

Posted by pmsfarmer @pmsfarmer, May 21, 2019

My Dr. sort of blew this off, but I am concerned about living awhile past 69, my current age. Any suggestions appreciated. He didn't feel a referral to a nephrologist was necessary.

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

@gingerw

@brklimeks Welcome to Mayo Clinic Connect. We are a community of patients, family members, and caregivers, sharing our unique health journeys with fellow members, offering support and experience, and what has worked for us.

CKD stages are based on the eGFR function level of our kidneys. From the National Kidney Foundation, here is a chart https://www.kidney.org/atoz/content/gfr

You mentioned you were taking spironolactone. Here is information from Mayo Clinic's website on that drug: https://www.mayoclinic.org/drugs-supplements/spironolactone-oral-route/description/drg-20071534. If you are taking spironolactone +hydrochlorothiazide, here is the Mayo Clinic information on that: https://www.mayoclinic.org/drugs-supplements/spironolactone-and-hydrochlorothiazide-oral-route/description/drg-20071484 And remember, interaction with other medications can be an issue!

Chronic kidney disease may be caused by genetic issues, medication side effects, lifestyle choices, high blood pressure, diabetes, or a combination of any of these! It will be to your benefit to narrow down the cause of your decreased function, in order to work with it, and minimize the effects as possible. For me, I am in Stage 4 now, having started out Stage 2, finding out I have a rare autoimmune condition for it. I take blood pressure medications, a water pill, and follow a renal diet.

You might want to consider getting to a nephrologist for kidney care. Many NPs and primary doctors are simply not educated to follow a kidney disease patient. It can be a sneaky disease.
Ginger

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Ginger, I have a multitude of diagnoses and am on more meds than you can imagine. Should I see a geriatrician?

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@brklimeks

Ginger, I have a multitude of diagnoses and am on more meds than you can imagine. Should I see a geriatrician?

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@brklimeks A good internal medicine dr plus a nephrologist might be a great combination for you. If you have a geriatrician within your community, that person could be in place of the internist. In my experience, I have usually set an appointment, and interviewed the dr to see if they are a good fit for me. I do not want to waste my time, their time, and resources to work with someone I will not benefit from.

Good luck, let me know what you decide, and if I can assist further?
Ginger

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@gingerw

@brklimeks A good internal medicine dr plus a nephrologist might be a great combination for you. If you have a geriatrician within your community, that person could be in place of the internist. In my experience, I have usually set an appointment, and interviewed the dr to see if they are a good fit for me. I do not want to waste my time, their time, and resources to work with someone I will not benefit from.

Good luck, let me know what you decide, and if I can assist further?
Ginger

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Thanks

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My primary didn't think I needed to either. But he approved it anyway. I am now seeing a nephro doc at Mayo. I highly recommend that because they have tests that the other hospitals do not have. I've been stable at stage 3 for over a year, maybe more, since getting to Mayo.

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@suebseab

My primary didn't think I needed to either. But he approved it anyway. I am now seeing a nephro doc at Mayo. I highly recommend that because they have tests that the other hospitals do not have. I've been stable at stage 3 for over a year, maybe more, since getting to Mayo.

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@suebseab Welcome to Mayo Clinic Connect! We're glad you found your way here. Do you know the root cause of your kidney disease? What are you doing to keep stable in your Stage 3?

You are lucky that your primary approved a referral. I have had a few drs who got miffed when I suggest a specialist of any sort. But, that is why there are specialists, right? We advocate for our own best health, and sometimes it is a contest of wills.

When Mayo Clinic is not an option, a good teaching hospital or one associated with a university can be a good fit for finding your medical team.
Ginger

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@gingerw

@suebseab Welcome to Mayo Clinic Connect! We're glad you found your way here. Do you know the root cause of your kidney disease? What are you doing to keep stable in your Stage 3?

You are lucky that your primary approved a referral. I have had a few drs who got miffed when I suggest a specialist of any sort. But, that is why there are specialists, right? We advocate for our own best health, and sometimes it is a contest of wills.

When Mayo Clinic is not an option, a good teaching hospital or one associated with a university can be a good fit for finding your medical team.
Ginger

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I had weight loss surgery. My dx is Oxalate nephropathy. I am supposed to stay away from certain foods and take as much calcium as I can tolerate to combat the oxalate crystals.

I do love my primary doc. He knows me so well. He actually thought it was logical that I would want to see the kidney doc even if he thought I didn't need to. He authorized for my peace of mind.

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@suebseab

I had weight loss surgery. My dx is Oxalate nephropathy. I am supposed to stay away from certain foods and take as much calcium as I can tolerate to combat the oxalate crystals.

I do love my primary doc. He knows me so well. He actually thought it was logical that I would want to see the kidney doc even if he thought I didn't need to. He authorized for my peace of mind.

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@suebseab I had heard that weight loss surgery can cause some other issues, and you are proving the point. That was good of your primary care to step up and help you.

Here is a website I found that you may or may not have seen yet for low oxalate diets: https://www.healthline.com/nutrition/low-oxalate-diet#foods-to-eat-and-avoid If I am repeating what you found out, my apologies!
Ginger

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@gingerw

@suebseab I had heard that weight loss surgery can cause some other issues, and you are proving the point. That was good of your primary care to step up and help you.

Here is a website I found that you may or may not have seen yet for low oxalate diets: https://www.healthline.com/nutrition/low-oxalate-diet#foods-to-eat-and-avoid If I am repeating what you found out, my apologies!
Ginger

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Thank you. I did find an extensive list that I printed. It shows the amounts of oxalate for each food item. Was helpful.

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@kamama94

@pmsfarmer, I've read and my docs also have told me you can live quite awhile in stage 3. They also told me that as we near 70 our kidney function naturally declines as part of aging and what would be abnormal for a young person isn't necessarily bad for someone 70+. When I was first diagnosed I was in stage 4 but moved up to stage three with proper diet and good medical management. Occasionally I drop back to stage 4 temporarily, depending mostly on what's going on with meds for other health conditions, but for the most part have been pretty stable for two years. Two different nephrologists have told me they don't usually start considering dialysis until a patient's filtration rate drops below 20 and stays there. As long as your primary care doctor monitors your lab work to check your kidney function, he may feel you don't need to go to a specialist yet. However, as patients, we are ALWAYS entitled to a second opinion. Or a third. Etc. Most docs don't object if you ask for a referral to a specialist "just" for a 2nd opinion. Quite frankly, although my own neph is considered to be one of the best, I have much better rapport with my very knowledgeable primary and would just as soon he managed my CKD but he feels a neph is more appropriate so I'm doing as he asks. Hope this helps and welcome to this discussion! There's good info here and lots of support.

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Update: a very bad case of shingles in 2019-2020 decreased my eGFR to 8 and I had to undergo placement of a jugular permacath in August of 2020 for immediate dialysis. I continued my renal vegetarian diet. In December 2020, kidney function had improved enough to stop dialysis. During the four months of dialysis, After a failed attempt to create a left forearm fistula to replace the jugular permacath ,a left forearm A-V graft failed before an upper left arm AV graft attempt was successful. After dialysis was stopped, the temporary permacath was removed and a mediport put in its place for IV access if needed, blood draws, etc. I now have an eGFR of 19 and am back in Stage Four, though this probably is temporary since I can't have a transplant and remaining partial kidney isn't going to magically re-grow. I guess this is my long-winded way of saying that a person can have impaired kidney function and still feel and do fairly well.

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@kamama94

Update: a very bad case of shingles in 2019-2020 decreased my eGFR to 8 and I had to undergo placement of a jugular permacath in August of 2020 for immediate dialysis. I continued my renal vegetarian diet. In December 2020, kidney function had improved enough to stop dialysis. During the four months of dialysis, After a failed attempt to create a left forearm fistula to replace the jugular permacath ,a left forearm A-V graft failed before an upper left arm AV graft attempt was successful. After dialysis was stopped, the temporary permacath was removed and a mediport put in its place for IV access if needed, blood draws, etc. I now have an eGFR of 19 and am back in Stage Four, though this probably is temporary since I can't have a transplant and remaining partial kidney isn't going to magically re-grow. I guess this is my long-winded way of saying that a person can have impaired kidney function and still feel and do fairly well.

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@kamama94 I am so pleased to read you are doing well.I get labwork done tomorrow; my last eGFR was 18%, and hoping that was a fluke. Like you, I cannot have a transplant.

Kidney disease can sneak up on a person, and it shows just how resilient and accommodating our bodies are, as we acclimate to a reduced function and our survival mode goes in to gear. Usually, it is a slow decline, and then one day we feel "off", or our routine bloodwork shows abnormal results. This is why some members here find themselves in Stage 3 without any idea how they got there!
Ginger

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