Polycystic Kidneys-double nephrectomy-Dr. Prieto-Transplant

@kidneybean1 welcome to Mayo Clinic Connect. I don’t have PKD or PLD. I am diabetic and have associated chronic kidney disease (CKD). I had a pancreas transplant 18 years ago. At some future time I will need a kidney transplant. I have been to Mayo Clinic Transplant Center in Rochester, MN for pre-transplant evaluation. I met Dr. Prieto. He was part of the team that did my evaluation. He is fantastic. It is wonderful that you have people willing to be considered for living donation for you. I have been looking for a living donor for kidney transplant since about 2016 and haven’t found anyone.
It is totally doable to get this done at Mayo in Rochester. You will have a pre-transplant evaluation. Potential donors will also go through an evaluation. Potential donors do a health screening on-line and Mayo takes charge after that to prioritize &/or rule out potential donors. I did initially have a handful of willing donors. Most were eliminated at the health screening stage. One made it to Mayo for the evaluation, but was ruled out then. Once the evaluations are completed and both parties are approved/ accepted the scheduling can begin. Mayo will attend to all the details for optimal results for both the recipient and the donor. Each will have a transplant coordinator and medical team. This collaborative approach is thorough from pre-transplant evaluation through dedicated follow up after surgery. They are a wealth of resources and information for everything such as getting there, lodging & transportation while there, what to bring, how to prepare …..
I want to tag a fellow volunteer mentor @rosemarya. She had a dual liver kidney transplant there. She may have more information and could answer any other questions better than me.

Cheryl
Thank you for that valuable information you gave me. I'm glad your pancreas transplant went well. I look forward to talking with rosemarya. That is incredible how they can do kidney and liver transplants these days. I hope you can find a live kidney donor soon.

@kidneybean1
Highly recommend Dr. Prieto & team. I had my polycystic kidneys out there last April by him. I did not have transplant at the same time but yes, they can do it. My experience was a great one. It was such a relief to get them out & have the pain & discomfort gone.

@kidneybean1
They have a transplant house called the gift of life. There are 2 & they are across the street from each other. If they have availability you can stay there at a discounted price or the other hotels will give a discount, its not as good of a discount though. Google it & you can read about it, its a great place.

I was misdiagnosed with PKD in 2017. When my GFR dropped into the 20s and my Nephrologist said no worries I made an appointment at Mayo in Rochester. Drove 7 hours and stayed 3 nights to find I did not have that disease. I was living and believing my kidneys would grow larger with cysts and was looking at a transplant by the time I reached 70. None of that was true. My disease is from lithium use over 40 years. I’m off that now and wonder if I really needed it, but water under the bridge. Many medicines, even over the counter can cause kidney failure.
I still am connected with Mayo. If I live so far away, will they still do a transplant if I need one? My last GFR was 25. I don’t know if that will ever be the case. I was so impressed with Mayo Clinic. Every person, medical staff, specialists I met were exceptional people. Thank you

@kidneybean1, I encourage you to read these 2 discussions started by @jolinda. She shares her story with PKD and treatment at Mayo Clinic not only Dr. Prieto, but the whole team.

- Best nurse EVER!
https://connect.mayoclinic.org/discussion/best-nurse-ever/

- PKD kidneys removed at time of transplant
https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/

I'm also inviting fellow kidney patients and PKD-ers like @rosemarya @kayb @stephanierp @blbird33 @bobinnevada @somedaydialysisfree to this discussion.

If you put PKD into the search bar at the top of your screen, you'll find many more relevant discussions and blog posts, like this one:
- Meet the Expert: Dr. Mikel Prieto
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/meet-the-expert-dr-mikel-prieto/

Keep asking questions. You're asking good ones.

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.

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.
Kidneybean1

I am 58. I was 54 at the time of my kidney transplant and 56, when my second kidney was removed. And just because my decline took 7 years, is of little consequence to your situation. As we know, the rate of organ decline is dependent upon many factors that vary from patient to patient. I am sorry you have pain to endure. I remember it and am beyond grateful it no longer exists in my body. Would they remove part of your liver too? To provide you with some relief? Focusing on blessings and gratitude helped me endure the pain of the disease, and I can hear it also helps you. I wish you the very best, and am happy to share anytime.

Stephanie
You asked me if they can do a resection on my liver. Unfortunately no. All of my liver have cysts. Liver specialist said liver transplant is my only option, sadly. I trust my nephrologist in understanding my rate of decline in kidney function. She says 3 years I will need a transplant. That does give me time to find a live donor.
I find staying busy doing things I enjoy like cooking and having the friends over and my volunteer work keeps me
from dwelling on the pain. I don’t need pain meds at this time thankfully. Thank you for your encouragement. It really helps me.