Polycystic kidney disease (PKD)

Posted by charliedelta @charliedelta, Sep 1, 2018

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

@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.

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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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My most recent mri stated the kidneys are nearly replaced by numerous cysts and complex cystic masses, compatible with polycystic kidney disease, anybody know if the kidneys can be saved.

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@triff1

My most recent mri stated the kidneys are nearly replaced by numerous cysts and complex cystic masses, compatible with polycystic kidney disease, anybody know if the kidneys can be saved.

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Hi @triff1, welcome to Mayo Clinic Connect. You'll notice that I moved your message to another discussion by the same name: Polycystic kidney disease (PKD). I did this so you can meet other members talking about PKD like @charliedelta @rosemarya @jolinda and @tomo.

Triff, have you been diagnosed with PKD or are you waiting to consult with your doctor with the MRI results?

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@triff1

My most recent mri stated the kidneys are nearly replaced by numerous cysts and complex cystic masses, compatible with polycystic kidney disease, anybody know if the kidneys can be saved.

Jump to this post

HI @triff1
I'm sorry to hear about your diagnosis. There are many ways which you can keep your PKD kidneys healthy longer (depending on their condition) but unfortunately there is no known cure for PKD.

* Keeping your blood pressure under control is essential to slow the damage to your kidneys
* Often Lisinopril is prescribed for high blood pressure because it helps protect the kidneys to some extent
* It is important to consult a dietitian to modify your diet and water intake appropriately
* Daily exercise and maintaining healthy BMI also helps a great deal
* Jynarque is a medicine that is a medication that is also used for treatment of PKD
* Actively avoiding mental and emotional stress is also important

I hope this list gets you started in the right direction. A Nephrologist (kidney doctor) will be able to give you details on your exact condition.

Do you have other family members with PKD? Was your diagnosis a surprise or did you expect you had it? Please know our online community is here to help and encourage you whenever you need us.

Jolinda

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