Told I had kidney disease at stage 3

@ailsas hello hope you’re doing well, I am 41 yeas op and I was never told I had kidney failure till I had stage 3 and now unfortunately I’m at stage for 4 kidney failure. The diagnosis was a huge surprise to me and my family I was so devastated and I am always depressed thinking about it getting worse and I’m so joung thanks to my doctor for not letting me know on time when it was at stage 1 or 2 at least I would of handle things differently but hey these doctors only work to get paid not for caring actually for there patients. But I hope you are having a good day my blessings to you .

I am so sorry you were treated so lazily. Can you find a new MD?Insist on a referral to a nephrologist. My MD should have given the option (but did not) so I insisted.

@santiago84 I'm so sorry you're dealing with this at such a young age. I hope you're doing well. I'll keep you in my prayers!

Hi, I’ve come to the healthy solution that most dr’s are full of em fertilizer, enough to fertilize a football field. You tell them what you think is going on and sure enough “you’re right” drink lots of water and I’ll see you next month with some more bullshit! There are some fine, dedicated physicians out there but it’s a crapshoot and you might get lucky but these dr’s are definitely in the minority! I’m sorry that I can’t be more help but I’ve faired far better by doing my own homework! Sucks don’t it?

I am beginning to wonder if it is not standard practice. My new primary MD, areas of interest geriatrics and endocrine spoke as if I should have been aware. Since the problem has been building since my kidneys shut down 19 years ago during an angiogram. I should have been told. Probably blame equal parts on surgeon and hospital. Fortunately for others hospital is now closed. Surgeon is really good at promoting himself though. MN surgeon b

@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.

@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).

My PCP sent me to Nephrology when my creatine started approaching 1.0 mg/dL, I think out of caution. It turns out I have a one in a million CKD: idiopathic immunotactoid glomerulopathy (ITG). It took a gazillion tests over months to eventually get a diagnosis from a kidney biopsy done at my HMO. The lab there was stumped so the sample was sent to Hennepin County Medical Center's lab which in turn sent it to Mayo Clinic's Nephrology and Hypertension Department's lab whose pathologist made her ITG diagnosis using electron microscopy. Further tests were needed to try determine which type of ITG I have. I am one of about ten people in the world whose ITG is not part of having lymphoma or myeloma. (There are about 100 in the world of those patients.)

Because of the lengthy time needed to make the diagnosis, I used the time to learn about ITG and staging kidney disease. (I am a chemist with some training in physiology and biochemistry so I can understand the conclusion sections of medical journal articles.)

I found several sources (including the one in the link below) who said that most people are diagnosed in Stage 3 because the symptoms are subtle in Stage 1 and 2 and don't automatically signal threatening health issues. However, Staging can be reconsidered later on.

I was first put at Stage 3 when my creatinine creeped over 1.0 mg/dL because I had significant proteinuria: 5000 mg/24 hours. I got "just in case" treatment (rituxan) for possible lymphoma, which would have "cured" the ITG but it didn't. Then I got "just in case" treatment (velcade) for possible myeloma which is not curable but could slow the progression of ITG. My hematologist is still of the opinion that I don't have myeloma but my creatinine dropped to .86 mg/dL and proteinuria dropped to "only" 2000 mg/24 hours. I am now considered to be borderline Stage 2/Stage 3 and have been for over a year. : )

Hope this helps.
https://www.kidneyfund.org/all-about-kidneys/stages-kidney-disease

About 2 yrs ago, I was hospitalized, my eGFR must have been around single digits. I was told recently they considered putting me on dialysis. My Creatinine was at 6. Other blood levels were all abnormal. They put me on antibiotics and IV of fluids, kept me there for 4 days, but were seeing improvement. I've been told I was stage 5. It took a couple of months, but blood levels were recovering, creatinine was trending downward. Urea, sodium, potassium, albumin levels all trending in the right direction. I felt chilled - anemia. I was tired, itchy, insomnia. I too was freaking out. I read tons of articles on what to eat. Some guidance from a friend was also helpful. I am now at 3b, Creatinine has remained right around 2, still high, but stable. ALL other blood levels are in the normal range. The anemia is gone, simply tried to eat foods higher in iron, cereals that were fortified, that seemed to work fine, rather than supplements. Insomnia, mostly under control. The itchy feeling returns periodically for a day or two. My dietician told me to keep protein intake at less than 60 grams per day. On my own, I had restricted to about 30. I've since put my target around 45-50, seems about right. Sodium, suggested at 1800 mg or less, most days I'm at 1500. Avoid foods with added phosphates, natural phosphates are better, but still need to watch. Potassium another area to watch. Eat less red meat, but otherwise, the dietician didn't have any other recommendations. She said, even though you are at 3b, your remaining kidney function is very healthy. At the last nephrologist appointment, they provided a projection for kidney failure based on lab trends, saying in the next year, the chance for total failure was in the very low category. In the next 5 years, I have a moderate risk. Much of the fear I had has disappeared. I'm back to enjoying life, eating better, exercising more, lost a little bit of weight, feel better. I'm 68 years of age.

@gwladj76
Glad to hear that things have improved. Your story is hlpful for me as I am at 3b and 77 years old. Thank you for sharing.