1. < Kidney & Bladder

Stage 3 chronic kidney disease (CKD): What specialists do I see?

Posted by rozalia @rozalia, Aug 24, 2016

My primary says I do not need to see a kidney specialist. Is this true. My blood chems are ok.

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2011panc | @2011panc | May 4, 2019
In reply to @gaybinator "Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of..." + (show)
@gaybinator

Immunotherapy killed my husband's transplanted kidney. It was a choice between the cancer (the result of immuno-suppression after the transplant) or living on dialysis. Squamous Cell Carcinoma is common in KIDNEY transplant patients - they don't know why. When you get a transplant, you MUST stay out of the sun and see a dermatologist regularly - an informed and tenacious dermatologist. My husband's dermatologist was neither of those things. My husband's form of SCC is spindle cell, and it is as aggressive as melanoma.

I find the complete reversal of dietary guidelines interesting. Before, and for the two years after the transplant, it was water, water, water. Now it is 32 oz per day, and that includes the water in food.

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@gaybinator I think I may understand the "reversal" of dietary guidelines relating to water. When trying to save a kidney they want you to use it regularly and keep it flushed. Once the kidney is gone, those fluids have no way to escape and remain in the body; often resulting in edema and other problems. I remember meeting one kidney transplant patient whose favorite meal post transplant was grilled steak and brown pop.

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kamama94 | @kamama94 | Dec 31, 2019
In reply to @marvinjsturing "@kamama94 In the past 4 years my eGFR has ranged from 10 to 17. At the..." + (show)
@marvinjsturing

@kamama94 In the past 4 years my eGFR has ranged from 10 to 17. At the recommendation of my nephrologist, I had the fistula surgery done 3 1/2 years ago. Still not on dialysis yet. If my eGFR was 33 and holding steady, I would not have the surgery. If it was dropping, I would begin thinking about it, but would probably wait until it was lower. That's my opinion.

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@marvinjsturing I appreciate this response. My neph said not yet since eGFR went from 24 to 35, most recently 32. . . She says some fluctuation is normal.

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basslakebabe19 | @basslakebabe19 | Feb 4, 2020

I was shocked when I read recent notes and documents on my Mayo portal which stated I had stage 3 kidney disease. No one ever told me that previously. I’m just wondering other people’ s responses; how is it diagnosed? What specific blood tests reveal it, if any? What works for trying to reverse this diagnosis, or is it already too late?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 4, 2020
In reply to @basslakebabe19 "I was shocked when I read recent notes and documents on my Mayo portal which stated..." + (show)
@basslakebabe19

I was shocked when I read recent notes and documents on my Mayo portal which stated I had stage 3 kidney disease. No one ever told me that previously. I’m just wondering other people’ s responses; how is it diagnosed? What specific blood tests reveal it, if any? What works for trying to reverse this diagnosis, or is it already too late?

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Hi @basslakebabe19, you'll notice that I moved your message to the Kidney & Bladder group https://connect.mayoclinic.org/group/kidney-conditions/

It is shocking news to hear that you have stage 3 kidney disease. You're asking the right questions "how is it diagnosed? What specific blood tests reveal it, if any? What works for trying to reverse this diagnosis, or is it already too late?" and members here in this discussion and others can help, like @kamama94 @2011panc @rosemarya @gaybinator @trishanna @fiesty76 and others.

While we wait for other members to join the conversation, you may be also interested in these discussions:
- Stage 3 Kidney Disease and Diet: What can I eat? https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/
- Stage 3/4 Kidney disease: I need support before my appointment https://connect.mayoclinic.org/discussion/i-need-support/

Basslakebabe, have you made an appointment to see a specialist?

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1 reply
Jane | @darlingtondoll | Feb 4, 2020

One way it is diagnosed is by a Cystatin C text. It checks your eGFR.

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2 replies
Jane | @darlingtondoll | Feb 4, 2020
In reply to @darlingtondoll "One way it is diagnosed is by a Cystatin C text. It checks your eGFR." + (show)
@darlingtondoll

One way it is diagnosed is by a Cystatin C text. It checks your eGFR.

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Test not text

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basslakebabe19 | @basslakebabe19 | Feb 4, 2020
In reply to @colleenyoung "Hi @basslakebabe19, you'll notice that I moved your message to the Kidney & Bladder group https://connect.mayoclinic.org/group/kidney-conditions/..." + (show)
@colleenyoung

Hi @basslakebabe19, you'll notice that I moved your message to the Kidney & Bladder group https://connect.mayoclinic.org/group/kidney-conditions/

It is shocking news to hear that you have stage 3 kidney disease. You're asking the right questions "how is it diagnosed? What specific blood tests reveal it, if any? What works for trying to reverse this diagnosis, or is it already too late?" and members here in this discussion and others can help, like @kamama94 @2011panc @rosemarya @gaybinator @trishanna @fiesty76 and others.

While we wait for other members to join the conversation, you may be also interested in these discussions:
- Stage 3 Kidney Disease and Diet: What can I eat? https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/
- Stage 3/4 Kidney disease: I need support before my appointment https://connect.mayoclinic.org/discussion/i-need-support/

Basslakebabe, have you made an appointment to see a specialist?

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Not yet but it’s on my mind. First I have to heal from my February 11 reverse shoulder replacement. After my six weeks of no driving is completed, I will check it out at Rochester.

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1 reply
basslakebabe19 | @basslakebabe19 | Feb 4, 2020
In reply to @rozalia "I think my primary knows I prefer the lower BP readings so he goes along with..." + (show)
@rozalia

I think my primary knows I prefer the lower BP readings so he goes along with it . However I only see the cardiologist once a year and the primary every 4 months so at times I feel he should really be handling the BP meds. The cardiologist put me on the amlodipine because my BP kept spiking high in the late afternoons 150/90 or higher. I really don't care for it because it causes my feet to swell up, one of it's side effects. Do you ever feel like just saying the heck with it all . I mean I get frustrated with these doctors at times. But then again were would we be without them. Hope you get some answeres to your a-fib problems. I get those on occasion, when I am stressed out or tense.

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I was just diagnosed with stage 3 kidney disease yesterday. I, too, swell from amlodipine. That confuses me because I’m not sure what swelling is due to kidneys or the pill.

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1 reply
Jane | @darlingtondoll | Feb 4, 2020

I am stage 3 and take amlodipine. It did not cause swelling for me. I lie in bed every afternoon for several hours to control swelling. My problem is paralysis from a spinal cord injury. It’s like being on a very long plane ride only I never get off the plane. I seriously limit my sodium every day. Watch your blood pressure.

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