Liver Cysts with PKD

Posted by elevinton @elevinton, Sep 16, 2018

I had a kidney transplant in 2012. I now have cysts on my liver. I am told my liver weighs between 15-25 lbs. Are there any treatments to reduce the size, remove or prevent the growth of liver cysts?

@elevinton

I also have a nephrologist at home in NW Florida. So far no help with these avenues.

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My experience has been that a nephrologist might not be familiar with all things related to specialized care. That is why I asked this question. It sounds like you have had conversation with the transplant dept a Emory. I can't understand why they would not investigate this issue, afterall, you transplanted there.

I don't know medically what is going on, but I would like to encourage you to seek an appointment at Emory (if they have a liver dept). Your health is much too important and your transplanted kidney needs to be closely monitored to be sure it is not going to be compromised. Mayo Clinic in Jacksonville – Is it convenient for you? You can always make an appointment there, or have your doctor refer/make one for you.
I really do care about you.

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I think I will ask for a referral to Mayo. I have not really gotten any support on this at Emory.

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@elevinton

I think I will ask for a referral to Mayo. I have not really gotten any support on this at Emory.

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Here is contact information for you and/or your doctor
https://www.mayoclinic.org/appointments

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Great. Thank you so much.

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@elevinton, I am thinking about you. Have you contacted Mayo about getting an appointment?

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@rosemarya

@elevinton, I am thinking about you. Have you contacted Mayo about getting an appointment?

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Thank you so much for thinking of me. I called Rochester to get into the study. I still have not heard back. It will be a week tomorrow. I plan on trying to call again in the morning.

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@elevinton

Thank you so much for thinking of me. I called Rochester to get into the study. I still have not heard back. It will be a week tomorrow. I plan on trying to call again in the morning.

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@elevinton, Did you hear from anyone or did you reach anyone yet?

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I'very called twice and was told I would get a call. Still haven't heard back.

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@elevinton

I'very called twice and was told I would get a call. Still haven't heard back.

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@elevinton
Am I correct that you are inquiring about a study rather than an appointment?
What is the name of the study that you are interested in?

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I am concerned because I have not seen any recent reply. How are you feeling?

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@rosemarya

I am concerned because I have not seen any recent reply. How are you feeling?

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Hi. Thanks for thinking of me. I havery sent information to Matiensure Hogan and am waiting to hear from her. The study has been put on hold but she was willing to review my situation and see if she has any help for me. Thank you so much for this reference.

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@rosemarya

@elevinton, I am thinking about you. Have you contacted Mayo about getting an appointment?

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Rosemary, I finally have an appointment at Mayo Rochester today. I will let you know how it goes. Thank you again for pointing me in the right direction.

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