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.

Liked by cehunt57

@fiesty76

Hi, basslakebabe, Like you my stage 3 CKD diagnosis in 2019 came utterly out of the blue. My pcp had ordered an ultra sound test to try to determine continuing unexplained wt loss. That scan report mentioned "evidence of renal disease". Wow! I googled to learn more.
I immediately made an appt. with my pcp for a referral to a nephrologist. After greetings exchanged, first words from neph. were: you have stage 3 renal disease. Nearly fell out of the chair…literally! because I'd already read of the 5 stages.

Thought something in the ultra results had informed her of the stage but it was later at home looking over the most recent pcp blood work/urine labs from pcp that I found the GFR 54 which meant stage 3, CKD. The pcp had mentioned nothing to me about previous or current GFR even when I asked her for the neph. referral! I think it was just a general CBC lab test that showed the GFR number.

Immediately upon diagnosis, I began researching kidney disease; put myself on a recommended renal diet, and found a kidneyschool.org website, along with excellent info from MayoClinic, that provided additional very helpful information.

The neph. told me to stop all NSAIDS like Advil, Aleve and others and to use Tylenol as my otc pain med in the future. Advil had been my "go to" for occasional back pain relief for years.

While I believe my kidney disease had probably been progressing for years without any symptoms or alerts from my pcp, I realized that I had taken many steroids over the years for chronic bronchitis as well as a slew of antibiotics for infections. I also have high b.p. and was diagnosed with pre-diabetes this past year…both closely associated with kidney disease.

From what I've read, once the scarring or damage has been done the kidneys, a reversal to "normal" isn't possible, I do want to stress that by putting myself on a renal diet, I improved my GFR from 54 to 68 within 2-3 months of the second lab test. So while the kidneys may not be completely "cured", they can be managed to Slow progression and/or maintain levels by changing some lifestyle habits. The big help for me has been adhering to "eating for my labs". If one value, like potassium for ex., is higher than the previous report, I further restrict potassium foods.

You have come to a very knowledgeable and supportive forum, made up of patients at all levels of CKD. The info. shared among members is both helpful and hope producing for me. Some have lived for years productively ff kidney transplants and others share how they are managing while on dialysis. Other members like us are new to the diagnosis and initially feeling overwhelmed; still others are at every stage in between.

Regardless of which stage, members have stressed the ff for any CKD diagnosed patient: the importance of self-directed learning about the disease and ways to better manage it; the importance of becoming very proactive in dealing with doctors and learning to understand lab reports; the need to make diet changes based on each individual's specific situation. One of the most valuable and reassuring benefits for me is realizing that we truly are not alone with this diagnosis and that there are others who are walking this walk and are willing to be supportive without pretending to give medical advice.

Unfortunately, it took 4 requests to my pcp and neph. to get a referral to a dietician and to get a prescription for an appetite enhancer. I fear many docs pay little attention until the labs show values so out of line that some form of treatment is required. For that reason, I encourage you to write down your questions and persist with your docs until you get answers.

Receiving a combined diabetes/kidney diet plan has simplified my life enormously. My pre-diabetes in now normal and my last GFR had improved another 2 points. With the appetite enhancer, my appetite returned and I began regaining some of the 29 lbs lost over the past 12 months.

It is good to "meet" another newbie here and hope you will continue to post and ask questions. Members here understand and care.

Jump to this post

Thank you Fiesty76! Your thoughtful and encouraging reply is so helpful to me as I'm still reeling from last week's meeting with my pcp and the sudden shocking news that I am at Stage 3 (eGFR 54). PCP told me to switch from Aleve to Tylenol for pain and gave me a list of confusing diet restrictions. He did not even hint at a referral to a nephrologist or suggest consulting a dietician. Well, Mayo Clinic is my go-to for finding reliable health information, and I am so grateful to have found Mayo Clinic Connect this time around. Right now I'm preparing a list of questions that I hope will be answered or addressed at a kidney health class I'll be taking tomorrow at a local dialysis center.

It's great to "meet" you as well as the other members of this forum – just knowing that someone understands is great comfort.

REPLY

I was recently diagnosed with stage 3 kidney disease. I wondered what happened to stages 1 & 2since that was never discussed by any of my doctors in the Mayo system. I have been hospitalized a few times in the past year and always had many blood tests. Now I want to go to Rochester to see what needs to be done. I would appreciate any recommendations for nephrology. I must first heal from an upcoming reverse shoulder replacement at Rochester.

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@basslakebabe19

I was recently diagnosed with stage 3 kidney disease. I wondered what happened to stages 1 & 2since that was never discussed by any of my doctors in the Mayo system. I have been hospitalized a few times in the past year and always had many blood tests. Now I want to go to Rochester to see what needs to be done. I would appreciate any recommendations for nephrology. I must first heal from an upcoming reverse shoulder replacement at Rochester.

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@basslakebabe19 Here is a link to some of the nephrologists at the Mayo Clinic Rochester campus
https://www.mayoclinic.org/appointments/find-a-doctor/search-results?searchterm=nephrology&locations=Rochester%2C%20MN
These are general nephrologists, and then there is a way to look at nephrologists who have a specific area of study. For example, my oncologist used Nelson Leung, M.D., a nephrologist with a focus on Amyloidosis, Kidney failure, and Monoclonal gammopathy of undetermined significance [MGUS]. You can click on each name and read about the dr. I am sorry I don't know anyone other than Dr. Leung.

I am currently at stage 3b myself [GFR around 33%], and will be returning to oncologist and nephrologist on 25 Feb for quarterly appointment.
Ginger

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@basslakebabe19

I was recently diagnosed with stage 3 kidney disease. I wondered what happened to stages 1 & 2since that was never discussed by any of my doctors in the Mayo system. I have been hospitalized a few times in the past year and always had many blood tests. Now I want to go to Rochester to see what needs to be done. I would appreciate any recommendations for nephrology. I must first heal from an upcoming reverse shoulder replacement at Rochester.

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I was diagnosed with stage 3 kidney disease also. Got a kidney biopsy done. They diagnosed me with fibrillary glomerulonephritis. I'm searching for clinical trials research on it but cannot find a thing. Getting scared

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@fiesty76

Hi, basslakebabe, Like you my stage 3 CKD diagnosis in 2019 came utterly out of the blue. My pcp had ordered an ultra sound test to try to determine continuing unexplained wt loss. That scan report mentioned "evidence of renal disease". Wow! I googled to learn more.
I immediately made an appt. with my pcp for a referral to a nephrologist. After greetings exchanged, first words from neph. were: you have stage 3 renal disease. Nearly fell out of the chair…literally! because I'd already read of the 5 stages.

Thought something in the ultra results had informed her of the stage but it was later at home looking over the most recent pcp blood work/urine labs from pcp that I found the GFR 54 which meant stage 3, CKD. The pcp had mentioned nothing to me about previous or current GFR even when I asked her for the neph. referral! I think it was just a general CBC lab test that showed the GFR number.

Immediately upon diagnosis, I began researching kidney disease; put myself on a recommended renal diet, and found a kidneyschool.org website, along with excellent info from MayoClinic, that provided additional very helpful information.

The neph. told me to stop all NSAIDS like Advil, Aleve and others and to use Tylenol as my otc pain med in the future. Advil had been my "go to" for occasional back pain relief for years.

While I believe my kidney disease had probably been progressing for years without any symptoms or alerts from my pcp, I realized that I had taken many steroids over the years for chronic bronchitis as well as a slew of antibiotics for infections. I also have high b.p. and was diagnosed with pre-diabetes this past year…both closely associated with kidney disease.

From what I've read, once the scarring or damage has been done the kidneys, a reversal to "normal" isn't possible, I do want to stress that by putting myself on a renal diet, I improved my GFR from 54 to 68 within 2-3 months of the second lab test. So while the kidneys may not be completely "cured", they can be managed to Slow progression and/or maintain levels by changing some lifestyle habits. The big help for me has been adhering to "eating for my labs". If one value, like potassium for ex., is higher than the previous report, I further restrict potassium foods.

You have come to a very knowledgeable and supportive forum, made up of patients at all levels of CKD. The info. shared among members is both helpful and hope producing for me. Some have lived for years productively ff kidney transplants and others share how they are managing while on dialysis. Other members like us are new to the diagnosis and initially feeling overwhelmed; still others are at every stage in between.

Regardless of which stage, members have stressed the ff for any CKD diagnosed patient: the importance of self-directed learning about the disease and ways to better manage it; the importance of becoming very proactive in dealing with doctors and learning to understand lab reports; the need to make diet changes based on each individual's specific situation. One of the most valuable and reassuring benefits for me is realizing that we truly are not alone with this diagnosis and that there are others who are walking this walk and are willing to be supportive without pretending to give medical advice.

Unfortunately, it took 4 requests to my pcp and neph. to get a referral to a dietician and to get a prescription for an appetite enhancer. I fear many docs pay little attention until the labs show values so out of line that some form of treatment is required. For that reason, I encourage you to write down your questions and persist with your docs until you get answers.

Receiving a combined diabetes/kidney diet plan has simplified my life enormously. My pre-diabetes in now normal and my last GFR had improved another 2 points. With the appetite enhancer, my appetite returned and I began regaining some of the 29 lbs lost over the past 12 months.

It is good to "meet" another newbie here and hope you will continue to post and ask questions. Members here understand and care.

Jump to this post

@fiesty78 Gosh, can I relate to your post. Several years ago (maybe 8?) labs showed declining kidney function but not more than what could be expected with aging. Ultrasound showed some stones which we thought had passed but otherwise intact kidneys. Flash forward five years. Labs showed only slight decline until one day – bam! 24-26 eGFR and MRI revealed a completely blocked and atrophied left kidney. Like you, I did lots of things – nursing background helped me research all kinds of CKD info. Like you, I found that dietary info was incomplete, some even inaccurate. So I painstakingly looked up every nutrient I could find info for in every food I could think of and came up with a basic recipe collection – by no means a complete diet, just a guide to lowering minerals and protein by altering and/or substituting ingredients in familiar dishes. I posted it here so won't repost. My GFR went back up to 37 within 18 months. Then – bam! – flu/pneumonia/COPD exacerbation and hospitalization and GFR back in the 20s. After I got rid of the steroids and the breathing stuff and went back on my renal-and-diabetic diet eGFR went back up to 35. What a rollercoaster! Then – bam! – same thing happened the following year, flu & hospital and slow recovery including recovery of kidney function, though it's currently at 33 eGFR.

I don't know much but I do know that my renal–and-diabetic diet works for me and has kept me away from dialysis for about 3 years now. I don't expect it to work for anyone else but if it does, Hooray!

The other thing I know is that this is a great place for info and support.

I hope everyone is doing well.

REPLY
@kamama94

@fiesty78 Gosh, can I relate to your post. Several years ago (maybe 8?) labs showed declining kidney function but not more than what could be expected with aging. Ultrasound showed some stones which we thought had passed but otherwise intact kidneys. Flash forward five years. Labs showed only slight decline until one day – bam! 24-26 eGFR and MRI revealed a completely blocked and atrophied left kidney. Like you, I did lots of things – nursing background helped me research all kinds of CKD info. Like you, I found that dietary info was incomplete, some even inaccurate. So I painstakingly looked up every nutrient I could find info for in every food I could think of and came up with a basic recipe collection – by no means a complete diet, just a guide to lowering minerals and protein by altering and/or substituting ingredients in familiar dishes. I posted it here so won't repost. My GFR went back up to 37 within 18 months. Then – bam! – flu/pneumonia/COPD exacerbation and hospitalization and GFR back in the 20s. After I got rid of the steroids and the breathing stuff and went back on my renal-and-diabetic diet eGFR went back up to 35. What a rollercoaster! Then – bam! – same thing happened the following year, flu & hospital and slow recovery including recovery of kidney function, though it's currently at 33 eGFR.

I don't know much but I do know that my renal–and-diabetic diet works for me and has kept me away from dialysis for about 3 years now. I don't expect it to work for anyone else but if it does, Hooray!

The other thing I know is that this is a great place for info and support.

I hope everyone is doing well.

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Thanks for your response to my probably too long reply to basslakebabe earlier, Kamama94!

Just fyi, I drilled down a bazillion posts earlier to find your recipes posted here; I printed them out and use them frequently! Thanks for them as well as your many other helpful posts as well.

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@fiesty76

Thanks for your response to my probably too long reply to basslakebabe earlier, Kamama94!

Just fyi, I drilled down a bazillion posts earlier to find your recipes posted here; I printed them out and use them frequently! Thanks for them as well as your many other helpful posts as well.

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@ fiesty76 How nice of you to say those kind things!

I had to LOL at what you called a long post, sometimes I get so wound up I can't stop typing. Soon I'll be making another long post when I (finally!) finish the Yes-No list of things CKD folks can eat after all, with certain tweaks or in reduced amounts, after being told we can't have them or should avoid them.

The good news is some manufacturers and producers are reducing sodium, phosphorus and potassium in their products.

A reminder to all of us here that nutrient amounts do change and different batches of something might have more or less of an ingredient or an amount. I got caught off-guard with one product and realized (happily) that the manufacturer had reduced some of the amounts of things I need to watch. Let that be a lesson to me to read labels more often!

Which reminds me, things do change, sometimes faster than we expect, so anyone relying on my recipes should re-check the nutrient values listed in them and read labels often if not always! Peace and blessings!

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@nancy80

Thank you Fiesty76! Your thoughtful and encouraging reply is so helpful to me as I'm still reeling from last week's meeting with my pcp and the sudden shocking news that I am at Stage 3 (eGFR 54). PCP told me to switch from Aleve to Tylenol for pain and gave me a list of confusing diet restrictions. He did not even hint at a referral to a nephrologist or suggest consulting a dietician. Well, Mayo Clinic is my go-to for finding reliable health information, and I am so grateful to have found Mayo Clinic Connect this time around. Right now I'm preparing a list of questions that I hope will be answered or addressed at a kidney health class I'll be taking tomorrow at a local dialysis center.

It's great to "meet" you as well as the other members of this forum – just knowing that someone understands is great comfort.

Jump to this post

Welcome @nancy80. I'm so glad that you found Mayo Clinic Connect and that @fiesty76's message inspired you to post your story.

You're not the only one who has been confused by the diet restrictions and recommendations for CKD. I think you might also be interested in this discussion
– Stage 3 Kidney Disease and Diet: What can I eat? https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

@kamama94 has been writing a CKD cookbook in fact and has shared a copy in the discussion.

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