← Return to Polycystic Kidneys-double nephrectomy-Dr. Prieto-Transplant

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Hello @kidneybean1
My name is Stephanie. I have PKD and cysts on my liver, as well. Four years ago, I had my kidney transplant at Indiana University and an open nephrectomy of one of my polycystic kidneys. I had my second kidney removed at Mayo by Dr Prieto laparoscopically. If I had it to do over again, I would have gone to Mayo and Dr Prieto for the initial surgery and had both PKD kidneys removed at the same time. He would have done it laparoscopically, which would have made my healing process exponentially better. Dr. Prieto is the best and has the most experience with PKD patients. He will remove both kidneys at the same time. This is far superior to having them removed individually. I did not feel decent until both of my icky PKD kidneys were out of my body and no longer oozing poisons into my system. For me there was a two year interim between surgeries. I could have felt a lot better during those years - which is why I recommend to everyone to have both kidneys removed at the same time if that is possible. I also tell people to insist on having the procedures done laparoscopically, which is harder for the surgeon, but soooooooo much easier on the patient. I cannot emphasize this point enough.

I elected to have my initial transplant at Indiana University, about 2 hrs from my home -as opposed to Mayo, which is 10 hrs away -because at the time of my kidney transplant, I had a 13 year-old son at home. I needed to be closer to home after the transplant, so I could be with him. Transplant requires some time in town with the surgeon and transplant team to insure the meds are controlled well and that you do not deal with any signs of rejection. It takes a few weeks. We stayed at a hotel for a few weeks, traveling to and from the hospital, so in that respect, it does not matter if you do the surgery a few hours from home or across the country - you will still be in a hotel or perhaps, stay with a friend or family member. Then after that, they wanted to see me about once or twice a week for a month or so. During that time, I commuted from home, with my husband driving.

With that being said, with a GFR of 39, it sounds like your kidneys are still doing relatively well. It took me a number of years (about 7 yrs) to go from 39gfr to 20 - which is when I was placed on the transplant list. And another couple of years to go from 20 to 10gfr - which is when I received my transplant. They wanted to wait until the last possible moment, because the transplanted organ comes with a shelf life:)

I hope some of this information is helpful. I wish you well. I am sorry you have to deal with the difficulties of PKD.

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Replies to "Hello @kidneybean1 My name is Stephanie. I have PKD and cysts on my liver, as well...."

Hi Stephanie,
I’m sorry you had to go through all that mess. But, I’m glad you are doing very well now. Thank you for all that helpful advice. May I ask how old you are? I am 69 this March. I’m hoping my egfr can stay in the 30’s for some time. I doubt they would even do a transplant on a 76 yr. old. (If it took 7 years of decline in egfr like you) But my nephrologist feels I’ll need a transplant in 3 years. I’ll be 72. Plus my liver is massive. I’m going to hope for the best and keep on enduring the pain. I have a lot to be grateful for…my husband, son, friends and hope. Thank you for responding to my questions. One day we will be free of pain.