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

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

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@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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@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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@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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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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@basslakebabe19

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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@basslakebabe19 If you have someone to drive you, you may want to try to get in to a nephrologist before your shoulder heals from the surgery. I was Stage 2 almost 3 when the dr first told me. That's the thing with kidney disease; sometimes it quietly sneaks up on you. It is a fairly silent issue. Your eGFR value is an indicator of the stage; what was your reading on the last testing? There are also some other values that are used together to measure and watch the progression of the situation. You asked if it can be reversed, and the simple answer is, sometimes. By lifestyle and diet, you can slow down or stop progression. I know a lady who seriously attacked her diet, and reversed from Stage 3B back to high Stage 2. Remember, also, that our kidney function decreases a little as we age, in healthy people. Besides the links that @colleenyoung included, you may want to look at rsnhope.org, a kidney organization founded by a kidney disease patient, that offers a wide array of information and podcast recordings. We hope you will keep us informed how everything turns out.
Ginger

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@basslakebabe19

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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@basslakebabe19, I was not familiar with Amlodipine, so I looked it up. I read that is used with or without other medications to treat high blood pressure. Do you have a history of high blood pressure? High blood pressure needs to be monitored and controlled because it is one of those hidden underlying causes for chronic kidney disease that @gingerw mentioned. When diet and lifestyle alone do not control the blood pressure, then a medication is prescribed. I am living with a transplanted kidney, and I take a blood pressure medication along with trying to maintain a healthy lifestyle. Is this a new medication for you, because one of the side effects is swelling of the extremities. It is okay to call your doctor or pharmacist with any questions or concerns. My experience was that it took a few trial and error adjustments until we found the best dosage for me (least side effects and satisfactory control of my BP)

Would you like some information about Chronic Kidney Disease? Here is a link to Mayo Clinic Patient Care and Health Information.
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
Who diagnosed the chronic kidney disease? What has been suggested for monitoring or for a follow-up appointment?

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@darlingtondoll

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

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@darlingtondoll, I am happy to meet you. I never had chronic kidney disease because my liver disease caused me to experience acute kidney failure. So my condition was swift and resulted in dialysis until transplant. I have jad my share of tests and monitoring for my transplanted kidney, and I have never had (to the best of my knowledge) the test you mentioned. Would you be comfortable to tell me about it?

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@rosemarya

@darlingtondoll, I am happy to meet you. I never had chronic kidney disease because my liver disease caused me to experience acute kidney failure. So my condition was swift and resulted in dialysis until transplant. I have jad my share of tests and monitoring for my transplanted kidney, and I have never had (to the best of my knowledge) the test you mentioned. Would you be comfortable to tell me about it?

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It’s kind of complicated. Just google it. It is a blood test and my nephrologist orders it along with a bunch of other kidney function tests every six months. When I get a regular blood test from my primary, my gfr looks normal. But the Cystatin C looks at other factors that reveal what stage of kidney failure that I am in.

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@rosemarya

@basslakebabe19, I was not familiar with Amlodipine, so I looked it up. I read that is used with or without other medications to treat high blood pressure. Do you have a history of high blood pressure? High blood pressure needs to be monitored and controlled because it is one of those hidden underlying causes for chronic kidney disease that @gingerw mentioned. When diet and lifestyle alone do not control the blood pressure, then a medication is prescribed. I am living with a transplanted kidney, and I take a blood pressure medication along with trying to maintain a healthy lifestyle. Is this a new medication for you, because one of the side effects is swelling of the extremities. It is okay to call your doctor or pharmacist with any questions or concerns. My experience was that it took a few trial and error adjustments until we found the best dosage for me (least side effects and satisfactory control of my BP)

Would you like some information about Chronic Kidney Disease? Here is a link to Mayo Clinic Patient Care and Health Information.
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
Who diagnosed the chronic kidney disease? What has been suggested for monitoring or for a follow-up appointment?

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My blood pressure is totally out of control. I am on three kinds of meds every day but so far, we can’t get it in a safe range. It’s normal in the morning, but it is up at noon and slightly lower at night. I keep a log for my doctor. I eschew sodium and eat a good kidney diet.

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I just took my blood pressure and it is 162/97

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@rosemarya

@basslakebabe19, I was not familiar with Amlodipine, so I looked it up. I read that is used with or without other medications to treat high blood pressure. Do you have a history of high blood pressure? High blood pressure needs to be monitored and controlled because it is one of those hidden underlying causes for chronic kidney disease that @gingerw mentioned. When diet and lifestyle alone do not control the blood pressure, then a medication is prescribed. I am living with a transplanted kidney, and I take a blood pressure medication along with trying to maintain a healthy lifestyle. Is this a new medication for you, because one of the side effects is swelling of the extremities. It is okay to call your doctor or pharmacist with any questions or concerns. My experience was that it took a few trial and error adjustments until we found the best dosage for me (least side effects and satisfactory control of my BP)

Would you like some information about Chronic Kidney Disease? Here is a link to Mayo Clinic Patient Care and Health Information.
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
Who diagnosed the chronic kidney disease? What has been suggested for monitoring or for a follow-up appointment?

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My nephrologist put me on a low dosage of Amlodipine. She told me she was prescribing it to slow the deterioration of the kidneys.

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@marvinjsturing

My nephrologist put me on a low dosage of Amlodipine. She told me she was prescribing it to slow the deterioration of the kidneys.

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Sorry to be late entering this discussion. I noticed key words that relate to my own condition and its treatment. I just had a wonderful hour-long meeting with my nephrologist, who has supervised my hypertension treatment for several years. "Amlodipine" is a calcium channel blocker for heart and arterial problems; it gave me edema in my lower legs, so it's now on my list of allergic meds never to use. For blood pressure, I take Coreg, Lisinopril, and Amiloride (a diuretic that preserves potassium which my kidneys otherwise throw away).

My CKD is stage 3. My GFR is 37 percent, measured every couple of months within a Chem-7 lab test and calculated from those tests and my personal characteristics.

After my session with my nephrologist last Friday, we agreed to leave my medical regimen as usual over the last three years and focus on life-style fixes — more exercise, drinking more water, and reducing stress. Just the meeting changed my BP, which had been running 150/90 on average, but I awoke Saturday morning and — after sitting quietly for 10 minutes — recorded BP of 117/76. Now my main challenge is to keep my stress under control. I went bowling this morning, rolled three lines, and found myself to be more stable and relaxed than before. Is there anything in my experience that catches your interest or your curiosity? Martin

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@marvinjsturing

My nephrologist put me on a low dosage of Amlodipine. She told me she was prescribing it to slow the deterioration of the kidneys.

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In an earlier post I said my nephrologist gave me Amlodipine to protect my kidneys. I was wrong. It was lisinopril.

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@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, 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.

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