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?

Interested in more discussions like this? Go to the Transplants Support Group.

Rosemary, Volunteer Mentor | @rosemarya | Oct 11, 2018

In reply to @elevinton "I'very called twice and was told I would get a call. Still haven't heard back." + (show)

@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?

Rosemary, Volunteer Mentor | @rosemarya | Oct 31, 2018

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

elevinton | @elevinton | Oct 31, 2018

In reply to @rosemarya "I am concerned because I have not seen any recent reply. How are you feeling?" + (show)

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.

elevinton | @elevinton | May 6, 2019

In reply to @rosemarya "@elevinton, I am thinking about you. Have you contacted Mayo about getting an appointment?" + (show)

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.

Rosemary, Volunteer Mentor | @rosemarya | May 6, 2019

In reply to @elevinton "Rosemary, I finally have an appointment at Mayo Rochester today. I will let you know how..." + (show)

@elevinton, I am happy beyond words for you!
I know that you will receive the best of care as well answers to your questions. I hope that everything goes in an acceptable direction for you.
I want to encourage you to look into the Gift of Life Transplant House while you are in Rochester. http://www.gift-of-life.org
It is a beautiful lodging for transplant patients and a caregiver.
I will be on the watch for your report.

elevinton | @elevinton | May 8, 2019

Rosemary, I am scheduled for an Extended Right Hepatectomy on July 23. Thank you again for all your help in making this happen. I will tour the Gift of Life House tomorrow to see if that will work for me.

Rosemary, Volunteer Mentor | @rosemarya | Jun 18, 2019

In reply to @elevinton "Rosemary, I am scheduled for an Extended Right Hepatectomy on July 23. Thank you again for..." + (show)

@elevinton, I am visiting today. and decided to drop in and say Hi. I hope you are feeling okay.
Do you still plan to have the Extended Right Hepatectomy in July? Is there any kind of monitoring or intervention taking place between now and then?

Rosemary, Volunteer Mentor | @rosemarya | Oct 4, 2021

@seantraci9, I understand that recently been diagnosed and have questions about treatment for cysts associated with PLD and PKD. I want to invite you to this discussion where some members have shared their experiences with liver and kidney cysts.

@elevinton, @jolinda

kidneybean1 | @kidneybean1 | Aug 6 8:43am

In reply to @jolinda "HI @elevinton Although I also had a transplant (due to PKD) I have not experienced any..." + (show)

Hi Jolinda
My nephrologist said I will need to have my grossly enlarged polycystic kidneys removed and a live kidney donor transplant. I live in NY. I want Dr. Prieto to do transplant. How do I start planning for this major surgery?