I am so frustrated! I had an appt at the transplant clinic just to get some info and questions answered. I asked the Dr about having a bilateral nephrectomy due to the size of my kidneys and the severe chronic pain. I have been unable to work for over 2 years and get only about an hour of activity in a day, due to pain. I take very high doses of pain meds to try and keep the pain under control. So, anyway the Dr says "You are in the drivers seat" so if you want to have the nephrectomy done then it can be done. I then asked if my family members could be tested to see if anyone is a match first and he said "absolutely". He just wanted to speak with my nephrologist and see what page she was on. So, he talks to her on the phone while I am sitting there and she flat out refuses to refer me for a nephrectomy! I am so upset to be told that I am in the drivers seat regarding my health, but I can't move forward without the referral from my neph. So, here I sit possibly for another 10 years or more unable to work or do anything due to the pain. My thoughts are that if I have to wait 10 years or more who will hire me in my late 50s and all my siblings will be too old to be able to donate a kidney. I know that there are others out there in worse shape than I am, but is it so terrible to want to have some sort of life back. I know all the risks and what life will be like after a nephrectomy and a transplant. Sure its scary, but the longer I have to wait, the bigger my kidneys get and the riskier the surgery. Sorry for venting. I am just so frustrated!!