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Told I had kidney disease at stage 3
Chronic Kidney Disease (CKD) | Last Active: Feb 16 9:55pm | Replies (68)Comment receiving replies
@cehunt57
I don't understand why patients are not alerted to CKD in its early stages. I was the one who brought my eGFR of 50 to the provider's attention. I was not given any advice re diet or even hydration. In three months my GFR was down to 45 and creatinine increased to 1 point 4 and subsequently my GFR dropped to 35. At that point I self referred to an nephrologist, but even then, was not alerted to diet restrictions. I started researching myself and have found good information. Also, was informed by my PC provider that only stage 3b were referred. I actually self referred when my GFR was 45.
In late November had an infection in my rt. kidney. I was quite ill and had no appetite. My PC put me on Cipro for 10 days which was effective. However I now understand that antibiotic is hard on the kidneys. On my repeat visit to my PC, I did not have a repeat urinalysis or any blood work. I have noticed consistent frothy urine now and that can be a sign of albuminuria. My urine test was negative when I saw the nephrologist.
Maybe since I'm in my eighties I'm not worth much in the way of resources.
Replies to "@cehunt57 I don't understand why patients are not alerted to CKD in its early stages. I..."
@rosemoore I tried to respond to you when I first saw this post over a month ago. Unfortunately my response got hung up in a “spinning wheel of doom”. I’m trying again now.
IMHO many PCP’s don’t take CKD seriously until is at least Stage 3 or even Stage 4. It is difficult to get a referral to nephrology before that. Some nephrologists don’t become concerned until CKD reaches Stage 4.
My story: In the early 2000’s I learned from my father-in-law (who was end stage) that hypertension, meds, hydration and diet are relevant to CKD. He had a kidney transplant in 2003 and I started doing my own research. I’m diabetic and found out that was one of two common causes of CKD. I had a pre-transplant evaluation for simultaneous pancreas kidney transplant. I was told that my CKD was mild - moderate and that I didn’t need a kidney transplant. I was accepted & approved for a pancreas alone transplant. I had the transplant in 2005. It was my own personal miracle and my diabetes was controlled for the first time since diagnosis (1975) BUT I still had CKD. In 2008 I self referred to a nephrologist. Since that time I continued to learn about CKD (what kidney function labs are and what they mean, hydration, diet, medication …..) I have had pre-transplant evaluation for kidney transplant. My eGFR has bounced between 14 - 42 since 2011. In the past few years it has settled around 34. My nephrologist once called me Stage 4 but now says I’m Stage 3 and stable. During the kidney pre-transplant evaluation I was accepted and approved for kidney transplant. I was inactively listed at Mayo transplant Center. It is inactive listing because my eGFR is too good for active listing (active listing is an eGFR less than or equal to 20)! Needless to say your numbers sound pretty good to me! How are you doing now?
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@rosemoore I wasn't alerted until my eGFR was 42, and renal dieticians still say "just hydrate) at an eGFR of 32. Unfourtunately we have to be our own doctors and detectives. My doctor, nephrologist, and opthmologist didn't catch that AREDS2 supplements are hard on CKD due to extremely high levels of copper (thousands of time the RDA); I feel better off them, less fatigue, and we will see if it affects my eGFR (52 before AREDS2, 32 a few months after starting).