Kidney Disease
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Symptoms of CKD - How did you find out you had kidney disease?

Symptoms of CKD - How did you find out you had kidney disease?

Kidney disease often has no symptoms until it's too late. Share how you were diagnosed with CKD and if you experienced any symptoms.

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In 2015, my bladder (and, incidentally, prostate) were removed by Dr. Colin Dinney at M D Anderson Cancer Center. MDA Pathology reported that the cancer was confined to my bladder only. A year later, MDA urologists discovered TCC (Transitional Cell Carcinoma) in my right ureter and kidney. Went to Johns Hopkins Medical Center for a second opinion. I learned that 5-8% of a specific type of bladder cancer called CIS (Carcinoma in Situ) dev- eloped kidney cancer. TCC and CIS, it turns out, are close cousins. The only viable remedy was surgery. In July 2016, successful surgery was completed in my home town of Richmond, VA. So far, I remain cancer-free. I'm on a renal diet because I have an eGFR of 30.

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Unreal.

Dixidude...

I thank God that they caught the cancer and you beat it! People don't know how ugly cancer is until it hits your own family. I know.

Know that you have all of my support and am cheering you on!

Stay strong and inspire others.

Bet

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Ditto on Bet117's comments! Thank you for sharing your incredible story. Wishing you continued cancer-free health!

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I had a chest infection in October 2014 and was prescribed antibiotics (Amoxicillin) for it and I am sure that is what made my kidneys ill as I never felt well after that. The symptoms were tiredness and having a metallic taste in my mouth. Although at that time I did not know about kidney disease and never went back to the doctors to say I did not feel right. I just put it down to being nearly 50 years old.

Then in early 2015 my brother was found to have high cholesterol and so after nagging from my mum I too had a cholesterol check in April 2015. This was the first time I had had a blood test since 2004 when I was perfectly fine with 100% eGFR. Well imagine my horror when the cholesterol levels came back fine but I was told I had stage 4 Chronic Kidney Disease with only 17% remaining kidney function.

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Thanks for sharing your experience! The symptoms of CKD (if any) are often vague as you describe (tired, metallic taste), its great your mum pushed you to go see a doctor! It's very scary to suddenly learn you are in Stage 4. How are you doing now?

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My mum pushed me to see a doctor due to my brothers high cholesterol. It was by chance that the blood test showed my kidney condition. I am now at stage 5. I am down to 15% eGFR so this means I have lost 2% over the last 3 years. I am still working full time and will carry on for as long as I can.

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I wish you the best! We also offer a transplant community: healthunlocked.com/nkf-kidn... and a dialysis community: healthunlocked.com/nkf-dial... if you are interested in either!

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was having a cat scan for unrelated reason and cysts from polysistic kidneys were seen. Also became violently ill from dye they used as a result.

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My nephrologist made it clear that all of my CT scans must be done without the (oral) contrast. CT's without contrast yield less information, so my urologist also orders a loopogram for my remaining ureter/kidney. Contrast is injected into the ureter (or stoma in my case because I no longer have a bladder), a series of 5-7 X-rays are taken, and then the contrast is withdrawn. These two tests seem to be quite reliable in detecting further cancer.

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I'm sorry to hear that. Was your kidney function significantly affected? How are you doing now?

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Mine was the same as Frankie24. I was at Mayo Clinic in Rochester, MN, being evaluated for Micosis Fungoides--a cutaneous T-cell lymphoma. A CT scan revealed all the cysts in my kidneys--that was 1997. When they told me my heart sank, as I remembered my Dad's brother had PKD and was on dialysis back in the 1980s. My Dad died at 65 and never exhibited symptoms--but 4 of his 6 kids have PKD at different stages. My sister and I are both on dialysis while another brother and sister are doing what they can to preserve their remaining kidney function.

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Thanks for sharing your story with us. Sorry to hear that so many in your family have been affected by PKD. I also wanted to let you know that we offer a dialysis community as well if you are interested in joining that one too you can do so here: healthunlocked.com/nkf-dial...

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Is there much difference between the course of CKD and PKD in terms of symptoms etc. ? Just curious, so much I see here my nephrologist seems to tell me something different. It is very confusing. He is a brillient researcher of PKD.

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PKD can cause pain due to the cysts, which people with other causes of CKD do not experience. There are some differences in course/treatment depending on causes of kidney function, so it's important to talk with your doctor. Nothing on this site should be taken as medical advice.

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PKD runs in my dad's family as well, He died at 68 from it, his dad died at 45, his grandmother, and several aunts, also passed from it. Right now I am the only other one that has turned up with it. I am stage 4 on the verge of stage 5 at 16 % and now on transplant protocol to receive a living donor hopefully within the next year. Sadly when I found out I went into denial for over 20 years before I began to have problems that led me to seek out a nephrologist, by that time my kidney function was not very good. Had I been proactive possibly I could have preserved some function, but I put my head in the sand and just went on with my life. I wish the doctors would have told me more back then. Perhaps I just could not hear it, I don't know. Now I take care of myself for sure !

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My "symptoms" started by having high blood pressure in 1992. I was already on medication for blood pressure, but my pressure was going so high I was getting headaches. Doctor determined that my kidney function was at 50% through blood and urine tests. At this time, I had no other symptoms, and I was about 7 years away from dialysis and transplant. Did more testing including a kidney biopsy and found I had FSGS. The next 7 years I remember being very tired, urinating more than normal, and feeling nauseated. I started dialysis in 1999 and just a few months later was called for my transplant.

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Except for uti's i didnt have any symptoms that i know of.

A year ago, after about 7 years of my gfr apparently being under 60, I finally got around to reading my online past test results and saw a diagnosis of 3rd stage kidney disease made about 3 years before. I had never been told anything about this. when I asked my doctor about seeing a kidney doc and she turned to me and said ... I TOLD YOU to stop taking pain pills !!! ... even tho i very seldom take them ... I stopped ... seeing her ! and found a new regular doc !

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I found out I had CKD stage 3, when I changed Doctors due to moving over 2 years ago. I was able to get all my blood work results transferred to the new Doctor. My new Doctor told me my kidneys were functioning at 50% and GFR results showed had been declining for many years. This was quite a shock as previous Doctor never mentioned anything about it. My previous Doctor either misdiagnosed or thought no need to do anything. I am glad to be on the right track now.

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Interesting, you and @Betsysue2002 have similar experiences. NKF is working to better educate primary care doctors on kidney disease so they feel more comfortable diagnosing and treating it in the early stages - Hopefully this helps to avoid others having a similar experience in the future. Thank you both for sharing your stories and glad you are on the right track now!

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Thanks for all you do for us with CKD. Early detection I believe is the key, even if includes only simple modification to diet.

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My job has a wellness program but you have to do lab work before you can join. When my labs returned our campus nurse suggested that I speak with my PCP about my results. After doing so I was referred to a specialist. Then I noticed I couldn’t keep anything down and started to gain weight. Found out the weight gain was fluid and my doctor made the decision to go ahead and put me on dialysis.

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Very sudden for you as well! How long have you been on dialysis? I'd also encourage you to join our dialysis community: healthunlocked.com/nkf-dial...

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I was on dialysis for 6.5 years. July 8, 2015 I was blessed to become a Kidney Transplant Recipient.

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Wonderful! Congratulations! Glad to hear you doing well!

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I went for my tonsils out and found in pre opp my blood pressure was 200/120. Further tests showed I had a GFR of 28, it’s been three years since then and I’ve had one failed transplant from my dad, anaphylaxis to HD, 2 seizures and a coma. Very dramatic I must say.

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Yes, that sounds very difficult, I'm sorry to hear you've been through all that. Are you on the list for another transplant now?

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I had a blood test that showed 1.62 mg/dl creartinine and I was seeing bubbles in my urine.....I am having a kidney ultrasound later this month....

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Intil i read some relplies i forget i had several brain fogs that i now relate to low gfr ... in 40s.

One was bad enough i called the ambulance and went to the er.

My doc ... the one that i left .., apparently diagnosed it as ibs which i was told i had for several years till my husband and i decided was actually probably used to purify the well water at a favorite restaurant.

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I had many issues my whole life which I have discovered was a result of many food and environmental intolerances. In 2013 I was seeing an integrative doctor and routine lab tests showed GFR of 57 and hematuria in urine. I was sent to a urologist. After doing lots of tests everything seemed normal but I was still having blood so he sent me to a nephrologist. She suspected IGA Nephropathy and thought my intolerances were an issue. After getting them somewhat under control my GFR rose to stage 2, but I started having proteinuria. After the proteinuria got bad a biopsy was done in Oct 2016 and I was officially diagnosed with IGA Nephropathy.

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Protein and microscopic blood in urine is my son’s story too. Only his primary doctor did not send him to a nephrologist. And the urologist did an endoscopy and found nothing. GP perhaps felt that nothing more was needed to be done as the EGFR was normal. Three years down the line my son felt mildly blurry vision at work and went to an eye specialist who advised him to immediately rush to the ER as he had very high blood pressure. The blood test there showed that he had ckd and a subsequent biopsy diagnosed it as IGA nephropathy. From stage 4 in April 2015 he has now improved to stage3 through diet and excercise. I feel the GP was not aware of the CKD proteinuria and hematuria link and I wish I was more aware and had done my own research instead of accepting what the doctor advised.

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Please don't beat yourself up over it. There is so much to know and do in this life. You did what you knew at the time. Just like your GP did what they felt was right. I think all of us on here wish we had done something sooner, but all we can do is share our stories so that maybe someone else can learn from what we've been through. Hugs to you. You are doing far more now than most Moms would do. Your son is lucky to have you on his team.

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Thanks zazzel. Hugs to you too. You are so right we share our stories so that maybe someone will benefit as it is all about being aware and taking timely action. Thank you for starting this discussion thread KelliC.

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