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Understanding GFR and kidney disease: What's normal?
Kidney & Bladder | Last Active: Jun 27, 2023 | Replies (44)Comment receiving replies
I am 84 and was told that I had CKD stage 3 after a total hysterectomie in 2020. And that it was not going to get better...But this was very encouraging to read THANKYOU!...I had a GFR of 33 and was told there wasn't really any need to change my diet and go on as usual. It seemed so stupid not to adjust you diet to accommodate lessen kidney function and being borderline prediabetic (A1C 6.4) My GP said that it all had to do with getting old. ..I was very angry and refused the offer of Metformin and said I wanted to try and control my numbers first with diet. She said she would be very surprised if I did. I put together a "crossover diet" by combining diabetic/kidney portion diet....and getting my blood tested every 3 mos. For A1C and GFR and my last numbers were A1C 6.0 and GFR 44! Which is better. Now my GP is saying she is only going to test A1C every six month and that I only need a check up every one to two years! This is very worrying to me because I need to know how I am doing if I am to keep on track. I know I am getting old but can't help wonder if this isn't a case of "your old and boring and going to die anyways so why bother" So does anyone out there know of how I might be able to do these tests myself or are there other simple tests that would help me keep track of how I am doing. I am getting ready for exhibitions and do my work and this situation is distracting and depressing...I cannot go silently into the night. Am so pissed off! Thank you for listening to my long rant.
Replies to "I am 84 and was told that I had CKD stage 3 after a total hysterectomie..."
Fortunately I do have a great primary doc but also see a nephrologist. Maybe there's one in your area your primary could refer you to?
I changed GP after he dismissed my concerns of GFR dropping 10 points in 3 months, from 65 to 55. He had not apprised me; had not made note of it. Said all the readings were in normal range. I insisted on seeing nephrologist. He refused to make referral. I studied publications from NIH, Mayo Clinic, others. They say 55 is not normal, but Stage 3a. I posted findings in note to GP, who grew adamant in reply, that there is no reason for me to see nephrologist. Meanwhile, my GFR dropped to 46, 9 points in 2 weeks, discovered in ER when it was thought I had a DVT. The ER MD made referral to specialist, and I began search for another GP.
The lesson here is to be an informed patient. Study your test results. Demand test results and explanation with direct medical advice for sudden changes. Do not accept dismissive attitudes. Find a GP/PCP who listens and responds with empathy.
I chose a internal medicine specialist as my PCP. He studied my charts before the new patient visit. He asked the same question I had asked which the GP had ignored. WHY HAD MY GFR DECLINE 10 PTS IN 3 MONTHS, AND 19 POINTS IN 8 MONTHS.
He ordered urinalysis which showed blood in urine. CT scan showed cysts. MRI defined cysts as benign. But I will see urologist in Sept.
My mother died of renal failure at 86, having endured CKD all her life from adolescence. So genetics may play a part.
Good news from recent blood work, the GFR has rebounded to 54. But I will still see the urologist for assessment.
1. BE AN INFORMED PATIENT.
2. QB YOUR OWN CASE FOR KNOWLEDGE ABD UNDERSTANDING.
3. ASK QUESTIONS ABOUT WHAT YOU DO NOT UNDERSTAND, THE JARGON OF TESTS, THE DIAGNOSIS, TREATMENT PLAN AND PROGNOSIS.
4. EXPECT CLEAR REPLY IN TERMS YOU CAN UNDERSTAND. TAKE COPIOUS NOTES IN THE DOCTORS OFFICE, SND AT HOME WHEN QUESTIONS ARISE.
Best wishes in your journey.
Maurice in Mineola
Hi there….I understand your emotions, with your situation. I am 65 and have experienced the same apathy from some MD’s. I have recently become aware that some labs are offering tests directly to the public… all kinds of lab tests. I have also recently learned from wise people on this site that there can be quite a lot of variation in results from different labs. So maybe you could contact your usual lab and ask if they offer tests without an RX from a Dr. The labs I’ve found online, include a result consultation with an MD they have some sort of service partnership with. Keep advocating for yourself and try not to let the frustration/anger of it get to you too bad. 👍🏼💛
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@fromthehill you have done remarkably well at taking care of yourself. (I’m 66 and not in as good a shape as you.) It sounds like you have issues with your GP not recognizing your accomplishments &/or not taking your concerns seriously. It is important to be heard and understood by your GP. Can you tell her how you feel about recent interactions with her and your current situation (“distracted, depressed and pissed off”)? If she is unwilling to respond perhaps it is time to look for a new GP? Another thing to consider is that she maybe has lots of other patients in way worse shape and is minimizing your situation? Still you deserve to be treated as an individual, not one of the herd. Another thing that has worked for me in the past is to make it personal for your provider. I have asked “what would you recommend if I was your mother”or “if you were me”?