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(Chronic kidney disease stage 3?!).Confused!

Posted by Nancy @nancyckd, Sep 15, 2015

( CKD stage 3) Hello all! I am brand new to this forum. Feeling a bit alone and confused about my dg. I was so pleased to find this group and look forward to sharing.
I was diagnosed with CKD/3 a few months ago. Im doing well. GFR on the higher end - fluctuates between 49 and 69. Mainly in the mid 50s.
So my question...! I would like to get some feed back on my nephrologist's approach with me.
Today my labs were good with gfr up to 69. This has happened before then a few months later will drop to 55 or 50. I was referred to this specialist about a year ago. She was monitoring me about every 4 mos. Today she said to come back in a year! I left feeling confused about my diagnosis. Did i even truly have ckd? As i was leaving., i asked what should i tell other physicians when they need background info on my condition? The Dr said to just tell them that sometimes my creatinine levels are elevated. Huh?! I felt dismissed and because GFR swing back up to 69, i was not being taken seriously as a ckd patient. Tonite I checked her records online regarding our appt. today, and her diagnosis remained
CKD 3. Should i have even questioned it?
I shouldnt have to look on a chart to see whats occuring with my health! I am wondering what others think about how this was handled by her. Regardless, i will request that my primary monitor my labs every 4 months. Any thoughts would be much appreciated. Perhaps i am over- reacting. But I felt dismissed and frustrated. Sorry this was so long!!!

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Nancy | @nancyckd | Sep 15, 2015

PS- the fluctuating GFR dates back to at least 2010.

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Rebecca McRoberts | @rebeccamcroberts | Sep 15, 2015

Thanks for reaching out, Nancy. I'm sorry to hear what you're going through. Is anyone able to share a personal experience or suggestion with Nancy?

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1 reply
Nancy | @nancyckd | Sep 15, 2015
In reply to @rebeccamcroberts "Thanks for reaching out, Nancy. I'm sorry to hear what you're going through. Is anyone able..." + (show)
@rebeccamcroberts

Thanks for reaching out, Nancy. I'm sorry to hear what you're going through. Is anyone able to share a personal experience or suggestion with Nancy?

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Thanks Rebecca. The Dr. is intelligent and receptive. But I still walk away feeling dismissed and unclear about how concerned I should be! Thx again. Hope to hear from others.

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Jeanne | @wolfer1975 | Jul 15, 2016

I always attributed my CKD stage two to being on antidepressants for 25 years or so. My psychiatrist says no but offers no explanation. I used to take a lot of ibuprofen for headaches and back pain and thought this was the reason. I recently read an article about proton pump inhibitors which I have been on for at least 10 years if not more. I was put on aciphex because of an esophageal ulcer and had never been taken off. I have a diagnosis of GERD now. The article I read (wish I had saved it) said being on PPI's for exzteded periods of time can cause kidney damage. After I read this article, without consulting my GE, I stopped my PPI and increased my water intake. All of the labels on PPI's say use for no longer than two weeks. Well I stayed on because I still have reflux. However I try to stay away from foods and drinks that cause heartburn and take Tums infrequently as needed. My last creat and BUN improved and my GFR went up 2 points. I am still in the "abnormal" lab range for these results but there was improvement. I try to stay away from ibuprofen as much as I can. I do plan on seeing my GE this fall and getting his opinion and if recommended another chem panel drawn. My neph "dismissed" me too as if I have nothing to worry about.

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1 reply
Martin Jensen, Volunteer Mentor | @predictable | Jul 15, 2016
In reply to @wolfer1975 "I always attributed my CKD stage two to being on antidepressants for 25 years or so...." + (show)
@wolfer1975

I always attributed my CKD stage two to being on antidepressants for 25 years or so. My psychiatrist says no but offers no explanation. I used to take a lot of ibuprofen for headaches and back pain and thought this was the reason. I recently read an article about proton pump inhibitors which I have been on for at least 10 years if not more. I was put on aciphex because of an esophageal ulcer and had never been taken off. I have a diagnosis of GERD now. The article I read (wish I had saved it) said being on PPI's for exzteded periods of time can cause kidney damage. After I read this article, without consulting my GE, I stopped my PPI and increased my water intake. All of the labels on PPI's say use for no longer than two weeks. Well I stayed on because I still have reflux. However I try to stay away from foods and drinks that cause heartburn and take Tums infrequently as needed. My last creat and BUN improved and my GFR went up 2 points. I am still in the "abnormal" lab range for these results but there was improvement. I try to stay away from ibuprofen as much as I can. I do plan on seeing my GE this fall and getting his opinion and if recommended another chem panel drawn. My neph "dismissed" me too as if I have nothing to worry about.

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@wolfer1975 and @nancyckd, I can identify with your concerns about chronic kidney disease and your experience with a kidney specialist. I ran through similar worries several years ago. In my case, my nephrologists became almost my primary physician, because hypertension was my main problem, and my HMO referred me to nephrology. There, I became familiar with a lot of kidney questions and medical answers.

One thing I've accepted is that I don't have to worry much about CKD when my lab tests are stable and I don't have symptoms. My GFR (glomerular filtration rate) recently dropped from about 60 (percent) to just under 50 (percent), so I asked about it. The doctor noted that GFR is not a direct measurement, but a formula calculation. The world of kidney doctors recently adjusted the formula, and it now results in a somewhat lower number. But I have no qualms. To me, a 2-point change in GFR is small and not worrisome.

A relationship between CKD and GERD is subject to speculation about side-effects of prescription drugs. The FDA has warned against long-term use of proton-pump-inhibitors (PPI), urging us to ask our Gastroenterologists for other therapies for GERD. My son-in-law heard that warning and asked his G-E for a new approach, which has pretty well fixed his problem.

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