I Have Baffled An Entire Urology Department

[REP]

Background: I'm in early kidney failure from FSGS; I produce kidney stones every 30-45 days and I've had a chronic kidney infection for about two years that's causing scarring, which can also make the kidneys fail. I had surgery in May to remove a stone deep in one kidney that was thought to be the cause of the the recurrent infection ... and since then, have had two full-blown infections, passed a rare stone, and currently have another infection brewing. In the past five years, I've tried and failed every drug to raise urinary pH (mine's *very* acid, and is one reason I form wheddellite, whewellite and uric acid stones) and prophylactic antibiotic therapy resulted in even worse infections.

Conclusions: I'm doing everything right. Continue home monitoring and start antibiotics when the stick turns pink.

Prognosis: Downgraded from "poor" to "we're so sorry."

[ProfessorGAC]

1. Wow!

Take care REP. This is a bummer, huh? All i can say is never surrender.
The Professor

[REP]

4. Well, It's Not Good News

But I found a place to order test strips on the cheap and I have a barrel of antibiotics.

[Sgent]

2. Wow

I'm so sorry to hear it.

Do you have an academic center nearby?

Have you tried seeing a nephrologist?

They are the medical experts on kidney's (Urologists are surgical experts). Although somewhat minor, its kind of like the difference between a cardiologist and a cardiac surgeon. They have a slightly different knowledge base -- with nephrology being experts in kidney function and disease states.

Good luck.

[REP]

3. I Never Ask For Advice From Laypeople

To fully explain what is wrong with my kidneys would require more typing than my damaged arm allows and more reading than anyone here is interested in. My particular constellation of failure/rapid stone formation/chronic infection is rare, but not unheard of, and treating it in any patient is a challenge; treating *this* patient even more so. I could tell you why, but again, I doubt it is of much interest to anyone.

I have an excellent team of specialists, and yes, I am quite aware of what a nephrologist is and I am under the care of one - one doesn't pull a diagnosis of idiopathic FSGS out of thin air, after all; a biopsy must be done by a nephrologist and those in kidney failure are cared for by a nephrologist.

As for consulting with a university, alas, that is not covered by my insurance.