GFR dropped 5 more points and I don't know why.

Posted by csage1010 (Sue) @csage1010, Sep 22, 2021

HI all, I got some blood work today and I was actually expecting the results to be good, or at least stable. My GFR dropped from 59 to 54 in 2 months. I have lost 20 pounds and my sugars are within normal limits. So sad.

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I do watch potassium and sodium. The key, partially, is to have Complete Metabolic Panels every three months.
Then you know what foods you have to watch. Dairy is another mystery area. Full of calcium but also full of salt.
Unfortunately nephrologists don't send you to specially trained nutritionists. This should be part of the treatment plan. There are many good books around.Potassium is found in dark sodas which most of us love. They become
another fluid to avoid. I've also found that nephrologists don't keep up with urines. It's very easy to tell someone
to continue leading an active, involved life but it's not easy to have a great time with a major disease hanging over
your head. Kidney research seems to be moving at a snail's pace. Kidney disease as they say is not a "sexy" disease.
Any suggestions are welcome. Bring on the research——

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@nscappa

You are so correct but I don't think any of these things are important to those very rich people. I do have an important question for all with CKD. I was speaking with my Cousin Carolyn who also has CKD-3. This is what her Nephrologist said to her (not verbatim): Keep eating the way that you are and watch your sodium intake. Really?? I have been avoiding magnesium, phosphorous, potassium (although I run low so I take supplements), caffeine, protein, etc. I'm not fanatical but I do watch the numbers. Who do you listen to?? I was shocked when she told me what he said. Am I being too diligent and missing out on some foods that I avoid? Any answers will be much appreciated. I already had CKD-3 in 2018 but the only way I found out was by reading my after visit summary. GP's need a course in kidney disease.

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@nscappa When I barely tipped into Stage 3A, I changed my regular diet to a renal diet by researching online with National Kidney Foundation, American Kidney Foundation, and general research. All my doctors told me the same thing as your cousin has heard, "not to worry, you have a long ways to go before it will be a problem, and so on". I was shocked, surprised, and angry. My goal was to slow down progression of the CKD. At that time, it was presumed it was associated with my Systemic Lupus, and way back in 1999 a rheumatologist had alluded to that. It wasn't until 2014 when an nephrologist referred by my primary pushed for more information, and after a kidney biopsy we found out I have an ultra-rare autoimmune kidney disease! I have continued to follow a renal diet since then, and feel it kept my kidneys somewhat healthy until the disease played their part.

To answer your question, no, you are not being too diligent, in my humble opinion. Take charge of your health, advocate for what path you want to follow. If a person's CKD is due to a lifestyle or health issue that can be addressed, change it! Rely on reputable research [Mayo Clinic, Cleveland Clinic, either of the two kidney groups listed above, etc.], don't be afraid to take a stand for yourself!

Kidney disease seems to be downplayed by many primary care doctors. I have no simple answer for you why they do this! As kidney patients, we soon find out how much our kidneys do for our everyday health, when we see the information available.
Ginger

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Thank you for your reply I really appreciate it and thank you for taking the time to reply to me. I just don't understand how a professional Nephrologist can tell someone with CKD-3 not to worry too much about it. Are they waiting for you to get to Stage 4 before being concerned?? Crazy. You take good care of yourself and thank you again.

Nancy S. : )

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Hi there Sue, I'm John. I've had stage 3a ckd for 10 yrs now. My Gfr is relatively stable, declining only very slowly. My Creatinine levels are ok but increasing slowly over time. This year I got referrals from my primary doc to see a nutritionist and a Nephrologist. I eat many small meals daily and made a chart of how much of each thing I was in taking. Start with your caloric daily need and chech each food you eat on your chart for calories, protein, sodium, sugar, fiber, potassium, phosphorus meet a nutritionist who can guide you to a better result. Then meet a Nephrologist who can also help along your way. These things could provide you with a better sense of security. Just make a plan with them and follow it religiously.

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Ironic, my cousin's GFR also dropped about 4 to 5 points in 2 months. How quickly have you lost the 20 pounds? Do you have diabetes (you mentioned your sugar levels)? I have GFR-3 and my highest number was 49 and I have blood work scheduled for September and I am very concerned about my numbers. I have been quite strict re salt, potassium, phosphorous, protein, etc., etc. My cousin doesn't eat this way but tries with salt. I have had so many different opinions on what to eat or not to eat. My cousin's Nephrologist told her to just keep eating as she has been but to watch her salt and drink more. I was surprised by this statement. Too many questions. Keep posting so we can see how you are doing. Have you seen a Nephrologist yet? I have not but I probably will see one in the upcoming months depending on my GFR number. Take care.

Nancy S.

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What did your doc say was a possible reason? John

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johnmac
you have no idea how lucky you are to have nutritionist who deals with nephrology patients. I have never received
any advice unless my test test numbers are off. Nephrologists should have nutritionists they work with. This is
rare in any but very large cities apparently. Otherwise, you're on your own depending on books on articles. Very
hard to understand kidney disease care especially when it's relatively common.Remains a mystery to me. Most
of us are on our own.

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@petuniamom567

johnmac
you have no idea how lucky you are to have nutritionist who deals with nephrology patients. I have never received
any advice unless my test test numbers are off. Nephrologists should have nutritionists they work with. This is
rare in any but very large cities apparently. Otherwise, you're on your own depending on books on articles. Very
hard to understand kidney disease care especially when it's relatively common.Remains a mystery to me. Most
of us are on our own.

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For me, it goes beyond the dietitian and nephrologist, but they are obviously important. I have a completed team with my PCP. acupuncturist, and endocrinologist. I have to remain proactive in my own care to have the latest research come to me by creating alerts on Google Alerts for the terms "creatinine", "ckd", "stage 3A", etc. Reading this forum helps as well, but the best sources are the National Kidney Foundations, American Kidney Fund, DaVita, and others. Getting my labs done every 6 to 12 weeks by my PCP is important to me. By being a member of the Mayo portal allows me to contact my dietitian and nephrologist at all times, and they respond back quickly. I don't need to wait every 3 to 6 months for answers.

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@collegeprof

For me, it goes beyond the dietitian and nephrologist, but they are obviously important. I have a completed team with my PCP. acupuncturist, and endocrinologist. I have to remain proactive in my own care to have the latest research come to me by creating alerts on Google Alerts for the terms "creatinine", "ckd", "stage 3A", etc. Reading this forum helps as well, but the best sources are the National Kidney Foundations, American Kidney Fund, DaVita, and others. Getting my labs done every 6 to 12 weeks by my PCP is important to me. By being a member of the Mayo portal allows me to contact my dietitian and nephrologist at all times, and they respond back quickly. I don't need to wait every 3 to 6 months for answers.

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@collegeprof Yes, as you mentioned, and I like to echo, each person has to be their own health advocate, as you know yourself best. Relying on trusted online sites like you mentioned, adding in Cleveland Medical Clinic, WebMD, and rsnhope.org [Renal Support Network].

When you have multiple conditions that coexist and need attention, it's important your entire medical team is onboard with great communication. Sometimes we as a patient need to remind them of that and lead the committee! I changed my nephrologist about a year ago when I felt he was not putting my best care as a priority; my new one, within the same practice, is a great gal who specializes in advanced kidney disease cases! She communicates regularly with my oncologist and vice versa; unfortunately they do not share the same medical records system.
Ginger

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I have a low GFR (46), without corresponding creatnine numbers and I am not diabetic. The kidney Dr and the PCP have encouraged me to get better about drinking plenty of water–particularly during this really hot summer. Kidney size is ok per ultrasound.

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