Yes Colleen, I do have PTE secondary, the issue is that ARB/ACEI are not able to suppress the EPO, consequence is that the RBC count is not decreasing - which causes the blood to become thick and ultimately resulting in blood clots & possibly a cardiac event. Typically the EPO should be under control in 12 - 18 months ( the GFR has been in upper 70s all the while) but I have not been fortunate with reduction of RBC count . The other alternative is to have phlebotomy done every so often.. problem is that every time you get phlebotomy done the Iron panel parameters drop down drastically. ( I have had phlebotomy done once 500mL but that just lasted for 3 months)

Reason I am looking for experiences in nephrectomy is: There is a debate whether native kidneys nephrectomy should be done before or after the Kidney transplant ... I am interested post kidney transplant - native kidneys nephrectomy experiences.
Regards