@rosemarya there's not a lot of proactive things they can do on the medical side since there isn't a treatment that will fix the problem per se. They aren't going to do a resection or transplant until I get to the point that it's needed. There are small things that the medical community knows about the disease that the patient can do, like not taking estrogen, as it can make the cysts grow. I didn't know this before I read about it in a FB group and then had it confirmed during my first trip to Mayo. My PCM, OB/GYN, kidney doc and liver doc never said anything about it and I was on hormone replacement therapy for three years which had estrogen in it. As soon as I learned about it, I stopped taking it. There are other things like keeping blood pressure in check, which mine is always low anyway. There are studies going on to test the theory of eating slightly lower than maintenance to help with cyst growth. Lots of little lifestyle things I guess. It's a rare disease so it just doesn't get the same amount of funding as others. In terms of Mayo and follow up with my local docs, they really didn't. I shared all the lab work, etc., with them myself though. I plan to continue going to Mayo once a year. I will also see my local kidney doc. Sometimes with her I will get my lab work done and then if it looks good, I skip a year since I know I have Mayo.