Recently Diagnosed with Nephroptosis (floating kidney). Anyone else?

Could you let me know the name of the doc at UTSW? My sister is struggling to get surgical intervention for her nephroptosis and is losing hope fast. She has pain at a 8-9/10 whenever she stands (and she has a very high pain tolerance!) It’s been completely debilitating and no local docs are willing to help. Thank you!

Hi, Gigi. I just read what you shared of your personal experience with what you believe to be floating kidneys. As one who has struggled with severe symptomatic nephroptosis and the accompanying medical ignorance, inexperience, and misdiagnoses for half my life, I feel true sympathy and empathy pains for you and would really appreciate knowing how things have been going for you since you last posted. Have you been able to find a doctor who is willing to listen to you and help you get an accurate diagnosis and treatment? Whatever has happened or will happen, please stay encouraged and keep hanging in there along with your hanging kidneys, and don't ever let anyone tell you its not real or that it's all in your head, etc. It IS real! If there is anything I can do for you, any information I can share or questions I can answer for you, or any encouragement I can offer -- even in sharing the story of my own personal experience with it -- please don't hesitate to let me know. May God bless you and all others who are sailing the tempest-tossed waves of these little charted and seldom journeyed waters.
Kathie B.