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@2gallonhabit

Hi Rosemary. I'm Stage 4 PKD and do a lot of research. I have both a blog and a Twitter account pretty much dedicated to all things pkd, ckd and tolvaptan/jynarque. Would you know if may has any in person support groups? I live fairly close to the Rochester clinic.

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Replies to "Hi Rosemary. I'm Stage 4 PKD and do a lot of research. I have both a..."

@2gallonhabit, I found a Transplant support group - (I do not know if it is open to anyone, or for patients only. I have included the phone contact information.) The solid organ transplant support group is an open group for pre- and post-transplant patients and their caregivers that meets every week.
Mondays
4 to 5 p.m.
Mayo Clinic Hospital, Saint Marys Campus
Mary Brigh Building, Conference Room 4-510
Contact: Danielle K. Peabody, L.I.C.S.W., M.S.W., at 507-284-6658
____________________________

I have located the following discussions in the Transplant Group. I invite you to meet others who have experience with PKD.

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

-Liver Cysts with PKD
https://connect.mayoclinic.org/discussion/liver-cysts-with-pkd/

@2gallonhabit, Do you expect to be moving toward a kidney transplant?