@stuartbell Sorry to hear you are still looking for a nephrologist. I see two nephrologists, including one at Mayo Rochester. I starting driving the 90 minutes from the Twin Cities but winters are tough. He rarely did much physical examination like listening to my heart and lungs, so I asked if we can do video visits. (I see my "ITG team" quarterly.)

The clinic sends a box of tubes, urine collection equipment and instructions to me and orders to my local clinic. When I go to do labs for the local doctors, the lab does the blood draws and packages everything up to send to Mayo, too.

I wonder if you could make a similar arrangement with a Rochester Mayo nephrologist. It's possible that since ITG is such a rare CKD (only 10 people in the world have been found so far by the team led by my Mayo nephrologist) and he has publications on ITG, that I was accepted as a patient. I may also have had a referral from my local doctor, perhaps the nephrologist.

It's possible (likely?) that he'd ask for an in-person visit to get things started.

Good luck.

BTW, I don't take many meds that directly affect my kidneys. But I do take meds for BP lowering, gout, and pseudogout, The exception is a med for lowering proteinuria that was recently approved for kidney patients but was first approved for patients with Type 2 diabetes that lowers blood sugar (I'm not diabetic). It seems to have an effect but my urine protein is still 10 times higher than normal. I'm back being borderline Stage 2 and Stage 3 after an experimental round of a plasma cell destroying med that has been observed to reduce ITG in myeloma patients (I don't have detectable myeloma).