A bit of an update...

[Chilly59]

It has been a while since I posted in this group about my having hematuria in my urine. I have had many tests done and no doctor has told me what is causing it. The last specialist who did a cystoscopy and 2 cat scans has alluded to my kidneys not filtering properly. I do have protein in my urine also and have had for years and was diagnosed with kidney disease but then my doctor retired. I am currently waiting on a referral to a nephrologist but am being monitored with urine tests and bloodwork every 3 months. (I am also a diabetic so that is not abnormal for me) I went to hospital twice with gross hematuria which I was told at the time after doing an ultrasound that no infection was present and no solution was offered as due to staff shortages I would not see anyone right away anyhow. I feel like I am on my own with this and just reaching out to ask if this is an issue for anyone else? I had not experienced this until the last year and just worried they are missing something in spite of the fact I have had all the tests done and continue to have my urine tested which always reveals protein and hematuria. We do not have access to health records here so I have to rely on my doctor to advise me and he is extremely busy. Thanks for anyone's input on here that has kidney disease and experiences this too.👍

[userotc]

Using a dipstick, my mum (ckd3) did show some haematuria 3 or more years ago but not since (trace, at worst) 🤞, so some things can improve. No protein either via dipstick 🤞but albuminuria accelerated in recent years which we believe is due to having a single kidney.

She uses Nutritional Therapy only at present to manage her ckd.

[Chilly59 in reply to userotc]

thanks I hope your mum continues to do well. I can see mine and it’s every test. I am trying to do what is in my control nutritionally to change. Dark diet cola has been my hardest challenge to give up!

[Sapphire187]

I have occult hematuria (blood in urine but not visible by the naked eye). I’ve had it for many many years. Had lots of tests over the years and they don’t know what’s causing it. It runs in my family. They told me it’s nothing to be concerned about, so I’m not. I hope you are able to get some answers from the doctors soon. I know how concerning it can be when something is wrong and you don’t have answers. Diet Coke was a huge challenge for me too, but I did stop drinking dark colas as it is very bad for your kidneys. Best wishes to you.

[Chilly59 in reply to Sapphire187]

Thanks Saphire187 very helpful to know. As far as the Diet Coke goes, I’ve been gradually cutting back drinking a lot of ice with it, but limiting the amount of Diet Coke kind of a taper. I do find it challenging. I’m a diabetic and it’s one of the few things that taste sweet to me. I could have.