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.

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@gingerw

@petuniamom567 Frankly, most internists/general doctors are not well-versed on kidney disease. In my humble opinion, there are way too many specialized systems within the body for one dr to be up-to-date on them all! While I agree they should be referring a patient earlier than they do, they don't. A patient must advocate for themselves and their health. A good nephrologist will refer you to a renal dietician, not a regular nutritionist, as our needs are very different! Unfortunately, again, these renal dieticians are not easy to find. We end up going to websites like davita https://www.davita.com/diet-nutrition or American Kidney Foundation https://kitchen.kidneyfund.org/ to find what we need to do with our particular situation. In reality, it helps us feel more in control of our own case. And remember, eating well, plus good exercise and reduced stress levels all will help us in slowing progress of our kidney disease.

It is important to know that a transplant is a treatment for kidney disease, not a resolution to it.
Ginger

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Very well said. You have basically said what I said in my comment. We shared so many of the same feelings and it's such a shame that my primary did not make me aware of my condition so that I could have been finding out more info to help it and eat the right foods and avoid those that I shouldn't be eating plus watching out for some of the dangers: potassium, protein, magnesium, and, of course salt. There is so much to know and learn. I will do my very best (even though I do allow myself about every 2 weeks a decadent day) but that's about it. I may have cut down that day to maybe every 3 weeks. I hope this helped you in some way but I think you know all you need to know. My best, Nancy

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In reply to @markdeegan "YES" + (show)
@markdeegan

A good starting point may be a urologist.
Certainly further specialization may be in order.
Beyond age related, as you know, there are many issues to address. Stage three is livable, and not an immediate threat of death.
You are smart to take whatever steps to control the CKD possible (I was diagnose with stage 4).
I leaned "to love me blood tests," and still enjoy my life.
My hope is that you will remember , it's not the meaning of life that so important, but having meaning IN your life.
Best

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As with your experience, and those of others on this blog, my physician blew it off' So did the first, highly recommended nephrologist I saw. What is it with these people? Stage 3 means get started; it does not mean go ahead as normal and wait.

Part of this response was probably affected by me being elderly, I thought. Then I read about others much younger than I being given the same advice.

Even the nephrologists to whom I was referred show very little preventative interest in my condition. On my own, I have tackled my Stage 3, lowered it to Stage 2, finally have a repeat of last summer's blood tests scheduled for July, and realized I had to become an expert in Kidney Disease, and all the attending peripherals that affect it or are affected by it.

I also send blood test results to Let's Get Checked, every few months, even tho I hate pricking my finger. That gives me a view of whether or not I am maintaining or improving my GFRs. When I found out, by accident, my GFR was 50. Now it is between 64-69, depending(?). (Several years on Bactrim for persistent UTIs)

I fought my way to the hospital nutritionist, but I am not sure if she is a kidney nutritionist, and it looks as if I have to be the one to make contact through the hospital system if I want a consultation - and even this was a result; of my perseverance.

This is not easy. I am not, by nature, aggressive or particularly persistent. Fear drove me. Remember, the leading cause of death for us, and others with certain diseases is cardiac arrest. I try to be dilligent about exercies: 30 minutes most days.

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@billchitwood

We have a great family doctor. However, he doesn't seem to set up follow-up appointments and hasn't scheduled urine test for over 1 1/2 years (another doctor did that), nor a blood test since last November and cholestrol test was done a year ago when he put my 88 year old husband on medication for high cholestrol (presumably due to CKD stage 3). Bill is suffering from extreme fatigue and cronic pain in the back and we are considering calling to see if there is anything that can help. Don't know if I should also ask if he be given the blood/urine tests before asking for an appointment. Bill keeps wanting to order energy and pain OTC meds he sees advertised on TV, which I think is a very bad idea. Bill is also getting very low BP readings when he takes a shower (lukewarm, using a hand-held and sitting on a bench). It goes back to normal in an hour or so (on BP medication for decades).

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I personally would run to a nephrologist and definitely see what's going on. I doesn't appear that your present doctor knows just what he is doing. Labs every 6 months, urine tests, etc. This sounds like it needs to be very soon so I hope that this will be your decision. These symptoms do not sound favorable so please get some more help soon. Take care!

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@hopeinal

I turned 69 yesterday & also was just diagnosed with Stage 3. Have Type 2 diabetes. My GP didn't suggest any kind of special diet other than keeping my A1c low nor did he suggest I see a nephrologist. Nevertheless, I've researched a lot about Stage 3 and have started on a low sodium, lower protein diet than I've been eating.

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Good for you. My GP (whom I loved) did not make me aware that I had CKD3. I read it on my patient summary and was shocked to see it. What the heck is CKD3 and what do I do about it??? I checked back on my Lahey chart to see when it seems to have started. I think in 2018 my GFR was 60 which is on the low side. In 2019 I believe it was between 44 and 49. It has seemed to have stabilized at 44 in 2021 and in 2022 it went up to 49. I am pretty well versed by now and have not seen a nephrologist as yet. I am trying very hard to keep track of my salt (always), potassium (I run low at 3.6 and I take supplements), magnesium, phosphorous, and protein. I have a wonderful book that I am following. I wish I could get blood work every three months but I don't think this is possible re insurance. I don't understand why a GP does not seem to be concerned about a CKD2 or CKD3!! CKD3 is nothing to not be addressed as soon as it is diagnosed. Well, you are doing well so keep up the good work.

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@gingerw

@petuniamom567 Frankly, most internists/general doctors are not well-versed on kidney disease. In my humble opinion, there are way too many specialized systems within the body for one dr to be up-to-date on them all! While I agree they should be referring a patient earlier than they do, they don't. A patient must advocate for themselves and their health. A good nephrologist will refer you to a renal dietician, not a regular nutritionist, as our needs are very different! Unfortunately, again, these renal dieticians are not easy to find. We end up going to websites like davita https://www.davita.com/diet-nutrition or American Kidney Foundation https://kitchen.kidneyfund.org/ to find what we need to do with our particular situation. In reality, it helps us feel more in control of our own case. And remember, eating well, plus good exercise and reduced stress levels all will help us in slowing progress of our kidney disease.

It is important to know that a transplant is a treatment for kidney disease, not a resolution to it.
Ginger

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You need a kidney doctor! My sister stage 4 . She gets blood work done every 3 months. Check your insurance. Transplant process is not user friendly. Do your homework knowledge is power. My sister also is type 1 juvenile diabetic for 50 years. Having an underlying condition transplant centers are hesitate. She will die without a kidney transplant and we have a live donor perfect match.

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My husband has been diagnosed with CKD3a. He’s overweight and had a bad UTI two years ago. His PC did not tell him his diagnosis, but he did mention reduced renal function. We first truly realized the situation when we saw CKD written on the after visit summary. This seems to be a familiar story. Also, we started researching and changing diet to improve blood levels. We scheduled a consult with a nephrologist but couldn’t get in earlier than August 1(search started in March). Not easy. We’ve reached out to Mayo andare in the process of trying to snag an appointment sooner than that.
The main thing is knowing what to eat for his specific needs.
After adding lost of water and cutting salt and protein, etc, his EGfr etc has vastly improved- possibly at Level 2 now?
Question- I’ve seen mention of numbers above 59 and I know there’s an equation to find that number but I don’t know how to figure it and why in the world is it not made available to patients from the start?

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@ljashton

My husband has been diagnosed with CKD3a. He’s overweight and had a bad UTI two years ago. His PC did not tell him his diagnosis, but he did mention reduced renal function. We first truly realized the situation when we saw CKD written on the after visit summary. This seems to be a familiar story. Also, we started researching and changing diet to improve blood levels. We scheduled a consult with a nephrologist but couldn’t get in earlier than August 1(search started in March). Not easy. We’ve reached out to Mayo andare in the process of trying to snag an appointment sooner than that.
The main thing is knowing what to eat for his specific needs.
After adding lost of water and cutting salt and protein, etc, his EGfr etc has vastly improved- possibly at Level 2 now?
Question- I’ve seen mention of numbers above 59 and I know there’s an equation to find that number but I don’t know how to figure it and why in the world is it not made available to patients from the start?

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@ljashton Welcome to Mayo Clinic Connect! You've come to the right place to ask questions, and learn from others about their experiences. We are all unique, but share similar stories, and what works for one may not be the same for another, or may be close with a little "tweaking". It underscores we are all in this together!

As so many have talked about, diet plays a major role in CKD [chronic kidney disease]. Paying attention to lab results, we can see improvements when we limit red meat, sodium, calcium, potassium, and phosphorous. Exercise also plays a major factor in our health, in general and with kidney issues. As a Stage 5 patient, I have watched my eGFR numbers slowly decline since 2007. One thing to remember, is that results are best viewed as trends, not a single set of results. A difference in labs, or hydration levels at the time of the blood draw, can change what we might be expecting to see. If the cause of our CKD is known, that issue may play a major factor in how our disease progresses.

As for eGFR numbers, here is a link to the National Kidney Fund article to help you understand what's behind that number. They are a great source of information, and also check out their diet section! https://www.kidney.org/atoz/content/gfr

Others have expressed the frustration of not having their medical professional take a Stage 3 diagnosis as serious enough for intervention. I put myself on a strict renal diet before 2010, and I believe it helped me slow my disease, even though doctors kept telling me "You don't have to do that." Being proactive and responsible in any way I could was beneficial to me. It is my belief doctors do us patients a disservice by downplaying the way we can guide ourselves to a better outcome.

Any other questions for me?
Ginger

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Facebook has a lot of support groups for CKD.

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