Hey everyone i'm new to this site. I have CKD STAGE. 3 Not far from stage 4. This problem was overlooked til last year when my internal med doc discovered it just by mistake. To me it was a big mistake and huge overlook on all physicians i was seeing. As i see multiple specialists. I keep asking to see nephrologist. Til this day i have not seen one. Did any of you see one before stage 4.
THANKS SO KINDLY FOR YOUR TIME. SORRY ABOUT CAPS. I HAVE EYES SO I CAN SEE THESE BETTER
THANKS
Hi and welcome to the community and personally, welcome to the club.You are not alone in your frustration. I was diagnosed in late June of 2017 with a GFR of 32. When I began my research about CKD, I compiled hard copies of all previous lab tests and discovered that I actually had CKD for over one year before I was told. I also use specialists and while it took a while, all of those physicians are no longer on my Care Team. I've replaced all of the physicians who did blood/urine labs and saw the results and never said a word to me. Back then I trusted that the physicians would tell me the truth about my health. I was wrong and it was a huge wake-up call. I replaced my PCP, urologist, and hematologist and found a nephrologist, new PCP, and a new urologist.
Now that you know you need to do the same thing and become your own advocate for your health. Always ask for hard copies of labs, diagnostic tests, physician summaries from each visit. Track all of your labs and be prepared to ask questions about every item on each test that is outside of the "normal" range.
I use a spreadsheet to track all of my labs. I list the name of the physician and the date of the labs across the top, and I place the name of each test run down the left side. I list the test results on the corresponding line and highlight anything that is high over the range in red and anything below the range is highlighted in orange. I can then tell at a glance if any trend is beginning and that tops the list of questions for the doctor at the next appointment.
At each appointment with a doctor I ask the questions and run the meeting. The doctor is there is help me understand my health issues and provide me with the options and I make the best decision for me.
To help you learn more about CKD, please go to the davita.com website and register for a free, 90-minute Kidney Smart class. It will provide you with a lot of information and resources.
If you need to find a nephrologist in your area, go to healthgrades.com/find-a-doctor and check the reviews for the most highly rated one in your area.
When you meet with the nephrologist, ask for a referral to meet with a Renal Dieitian. Bring your hardcopies of the labs and together, you and the RD can develop a kidney-friendly meal plan designed for you to help you slow the progression.
You've got a great community here to ask questions and get support for your CKD issues.
Best of luck.
I lost my mother because Drs were conservative & i did not take a proactive role. I should have done what you did: “I've replaced all of the physicians who did blood/urine labs and saw the results and never said a word to me. Back then I trusted that the physicians would tell me the truth about my health. I was wrong and it was a huge wake-up call. I replaced my PCP, urologist, and hematologist...”. Why do Drs downplay labs / is it denial? Fear because they don’t really know what to do & want to wait until an ER dr sees you? During this pandemic we need Drs who affirmatively say you better get to the ER!
My condolences for the loss of your mother.Why doctors don't take it more seriously until it gets to Stage 4 is beyond my understanding. Once I received the diagnosis from a new to me PCP, I found a nephrologist through the professional who taught the Kidney Smart class in my area. That guy was upfront with me from the very beginning. My GFR then was 32 and he advised me to look into the modalities for dialysis just in case my slide continued downward. They went the other way. When I asked why doctors don't inform patients in the early stages like 2 or 3, and he told me that more inform patients at Stage 3 than at Stage 2, and the reason was that they usually didn't do enough blood tests, especially on older patients and until they went deep into Stage 3 it was presumed to be normal decline with age. He has left the group and now teaches new nephrologists at a teaching hospital. The doctor who replaced him for the last year is competent but not as sharp.
I'm glad to hear you are being proactive. It's the best thing you can do for your health.
Continued success.
Sorry to hear about your CKD 
Do they have any idea to the cause (e.g. diabetes, hypertension, PKD, or something else)? And, how do you feel? I felt quite well at stage 3a/b.
When I was diagnosed with PKD my creatinine was about 1.34 (e.g. possibly CKD stage 2). I was referred, by my primary care, to a nephrologist. That was about eight years ago. Not to scare you, but my kidneys failed fast — moving from stage 2 to ESRD in that eight years. My condition was exacerbated by colon cancer stage 1 where I had lost a lot of blood from the tumor, over many years. That certainly didn't help my cyst filled kidneys. Also, I didn't help myself either, as I skipped several years of blood test out of fear. If I would have been more vigilant I may not have needed a kidney for many more years. Yet today I'm post-op week 9 after a kidney transplant with a creatinine of 1.17.
My suggestion is to stay on top of your CKD and insist to see a nephrologist. Find out the cause and go from there. There are many viable options for CKD stage 3 and beyond. Diet and exercise, managing co-morbidities (e.g. hypertension, diabetes), and, if necessary someday down the line, life saving technologies such as dialysis or transplant.
I'll send positive thoughts your way 
Christopher
I was sent to renal when my eGFR dropped to 30 from 60. I was stage 3 at that time. I was upset that I hadn't been educated that my blood pressure affected my renal function.
As you can see from replies so far, you're not alone with frustrations over medics. A few years ago, my dad discovered mum had had stage 3 for several years by perusing Patient Access - without being informed by her GP. We believe it contributed to her nephrectomy for cancer a year or so later.So it's DIY treatment now!
Probably a waste if time to take medics to task legally, as they're bullet proof (I know from personal experience). In mum's case, theyd probably just say most 55 year olds (her age when dad noted) have CKD!
Did you file a suit? 55 is young!
No because my dad spent months communicating with solicitors to try to sue the GP that prescribed a drug which caused my own health problem.
Without quoting legal terms, essentially the solicitors were negative about success based on the assertion that other GPs would have also prescribed it! Bullet proof!
I am emotionally invested in this topic of medical errors so please excuse me as I have a beef with bad docs.
Ok, here in America then we must see what the standard of care is for the professionals involved in the specific treatment. If the treatment is still correct under the standard then we prove the standard is negligent. What was the standard last year could be malpractice today. Just my thoughts as I prepare to file suit on behalf of my mother. It’s an uphill climb but that doesn’t mean you can’t reach the top.
I wish you luck. In the UK at least, there is a 3yr window for medical negligence. That has now passed for both mum and I.
I see what you mean. You have it better there than I do here. Here, in America, each state has its own set of laws - so in New Jersey, we have only 2 years to file suit or your out of luck unless you can prove a delay because the negligence was not discovered until later for good cause. Yes, I see what you mean by Bullet-proof. So you need a better bullet, No? That’s what I intend to find. I am still within 2 years. They have many shields they put up and I intend to penetrate each one. PS: I used to work for the US Army. So hopefully I know about shields- though everyone tells me it’s a lost cause. But I don’t believe its lost until its lost:).
Hello and welcome to healthunlock. I started seeing a kidney doctor when I was at stage 3. Your doctor should be aware and helping you get set up with a kidney specialist A.S.A.P . Know that you are not alone living with kidney issues this is a great website for support, and others who you can relate with. Good luck
No.....I am a diabetic and mine was found through a routine blood draw. I got in to see a nephrologist. I now have an ultra sound scheduled for December7. All I know at this point is the meds I was on did something to me and I was really sick. No energy..no appetite...and explosive diarrhea. As soon as my GP took me off of my diabetic meds....I was instantly better. But I now have kidney problems. I’m hoping to improve them with better diet and life style. The nephrologist showed me my chart and I had some loss of function..but I was doing fine then I just jumped over the edge into stage 4. He ask me..”what happened”... so we will see. I’m scared to death and everything you read is gloom and doom and no hope.
I did get a blood test twice a yr and sometimes more, not one single Dr mentioned it to me. I found it on a lab report which I normally don't get the report. The lab report said it was low so I looked that up and saw that it is a concern. Then I went to a nephrologist and he told me I was stage 3. I am sure I have had this for at least 7 yrs and I have had dozens of blood tests and not one single Dr brought it up. Makes me mad but I have to move on.
Mine started in 2014 when I was diagnosed with an autoimmune disease (Graves) which causes hyperthyroidism and it stayed around 60 until 2016 when it began it's descent. My last blood work was May 24 2022 and it was 22. It was also 22 in Mar 2022. I knew it as I had frequent blood work due to the Graves and once it dropped below 60 I asked for and received a referral to a nephrologist. Had to get a new one and he did US, MRI and biopsy to determine the cause which it high BP. I'm now on meds that seem to be helping it. But since most people either don't go to the doc unless they are very sick or they go once a year. I believe it's MY responsibility to monitor my health and not someone who sees 10 or more people a day. If I don't understand something I research and ask questions until I get an answer I can understand. I also don't blindly trust the medical profession any more than I trust politicians.
Sorry, but I would bet that most of us have this story. No one mentioned CKD to me when I was spilling protein at 28 yrs old---of course my GFR is worse now and so is protein at age 57. SMH...I am actually the one who researched the lab report. What the blank. And I never seeing a hand full of drs again.
Nephrologist doctor with CKD... what do you think?
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