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rosegirl1 (@rosegirl1)

Have hematuria. Trying to find cause.

Kidney & Bladder | Last Active: Dec 1, 2021 | Replies (16)

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I have white cells also in mine. I will be going to my 5th urologist. When I do this I have to be put on antibiotics, or I will get sick. My hematuria is in intermittent. I see than I do not. I must have something rare

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Replies to "I have white cells also in mine. I will be going to my 5th urologist. When..."

Hi @rosegirl1 I have had a benign hematuria since I was a young girl. I am now 65 years old. My kidney function is below normal, but with continuous oversight and a biopsy, it shows I am doing well. I have been diagnosed with sarcoidosis which led to a heart transplant two years ago. Auto-immune diseases are able to affect the kidneys and cause all sorts of weird things. Sarcoid is an auto-immune condition. I am a bit anemic – just tenths of a percent below normal, but all blood tests show nothing wrong. I do not have white blood cells, but I have none to spare, as my anti-rejection meds cause a decrease in their numbers.
I wish you the best with the next urologist and perhaps they can test or explore the idea of an auto0immune condition.

Well, @rosegirl1, I can understand why you are tempted to think you have a rare condition. That's a natural conclusion when one becomes ill repeatedly under similar conditions. I'd feel the same way, and I'd want to get a handle on the root cause of the bacterial infection. In particular, I'd want to find a way to phase out the use of antibiotics, which too often are a doctor's way of treating the symptoms and ignoring the basic cause. When you see your new urologist, I hope you'll have a list of a half-dozen or more questions you'd like answered — questions that are based on detailed descriptions of the symptoms you mentioned. Will you be able to give your new urologist documents and reports from the prior examinations and treatments you've had so that the full picture can come into focus? I hope you can get on the trail toward the treatment you need with a doctor who's willing to help you be confident that your condition is stabilized and under control. Martin

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