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charliedelta
@charliedelta

Posts: 1
Joined: Aug 23, 2018

Polycystic kidney disease (PKD)

Posted by @charliedelta, Sat, Sep 1 6:04am

Hello am new to the group. My story is that am a pkd patient at stage 3 with clearace at 175. I’ve been on salt & protein diet for about 12 yrs since I was on the edge of stage 1. like to get your advice for future planning .

Liked by jin51

REPLY

@charliedelta. Good Morning, and Welcome to Mayo Connect. I would like to assure you that you are not alone with your diagnosis of PKD. And I believe that your desire to investigate and plan for your future are going to be to your advantage.
My own experience with liver/kidney failure – liver/kidney transplant tells me that being proactive, and taking care of oneself along with good medical care are the best way to proceed.
Here is what Mayo Clinic has to say about kidney disease (PKD).
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820

I want to invite you to the Transplant Discussion Group where you will meet @jolinda who has shared her own PKD journey. You can read about what others are sharing, and I encourage you to participate with your own questions and comments. That is how Connect works – by sharing we are able to help others and to support each other. https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/

I look forward to meeting you there.
Is there anything else that I can help you with? Let me know.

Hi CharlieDelta,

I am so sorry that you have this disease! Because it is an inherited disease many of us have watched people we love go through kidney failure in our lives and it can feel like a scary and lonely process at times. I want you to know you are not alone, many of us have traveled the road ahead of you and are here to help if we can.

I inherited PKD from my mother's side of the family and I can tell you options have come a long way in just one generation. You are so smart to learn all you can about caring for yourself including as you mentioned in your post watching salt and protein. Keeping blood pressure in check really eases the burden on your kidneys. In addition to closely watching what I ate in the years leading up to transplant I would also remind my doctors of my condition when they were prescribing any meds because I learned some drugs are processed through the liver instead of the kidneys and they can generally substitute one for another. Staying hydrated was also a big help for me.

Even though I was good to myself eventually the PKD caught up and I received a transplant from a living donor. Because my kidneys grew so large from the PKD they were removed at the same time that I received my transplant. Post transplant I actually needed to increase the salt in my diet. 🙂

If I can help answer any questions or ease your journey let me know.

Jolinda

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