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elevinton
@elevinton

Posts: 13
Joined: Sep 07, 2018

Liver Cysts with PKD

Posted by @elevinton, Sun, Sep 16 4:30am

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?

Liked by jodeej

REPLY

Hello @elevinton. If you don't mind me asking, how much is a liver supposed to weigh? 15-25 lbs sounds like an incredible number, but then again, I am not positive on what it is actually supposed to be. Here is a discussion you may want to check out as well that has a few members sharing their story with PKD, https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/. I would also like to invite back @natalieo, to share her experience with liver cysts. @elevinton, if you don't mind sharing, has your provider or transplant surgeon talked with you about any options to shrink the size of the cysts or the size of your liver?

HI @elevinton
Although I also had a transplant (due to PKD) I have not experienced any liver symptoms like you have described. Sounds rough, I'm sorry you are going through this. I'm hoping others who know more on this topic will jump in and give you and the rest of us some insight so we all gain some new knowledge. In the mean time welcome to the group and thanks for bringing up this important issue.
Jolinda

@JustinMcClanahan

Hello @elevinton. If you don't mind me asking, how much is a liver supposed to weigh? 15-25 lbs sounds like an incredible number, but then again, I am not positive on what it is actually supposed to be. Here is a discussion you may want to check out as well that has a few members sharing their story with PKD, https://connect.mayoclinic.org/discussion/pkd-kidneys-removed-at-time-of-transplant/. I would also like to invite back @natalieo, to share her experience with liver cysts. @elevinton, if you don't mind sharing, has your provider or transplant surgeon talked with you about any options to shrink the size of the cysts or the size of your liver?

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Adult female is approximately 3 lbs

@elevinton, Good Morning. I am a liver/kidney recipient, and although I am not familiar with your current situation, I want to welcome you to this discussion.
I have located some information that I want to share with you from the Mayo Clinic Patient Care & health Information.

Enlarged Liver (mentions liver cysts) – https://www.mayoclinic.org/diseases-conditions/enlarged-liver/symptoms-causes/syc-20372167
and
Polycystic kidney disease (mentions liver cysts)
https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820

elevinton, I can only imagine how uncomfortable this must be for you. How are you feeling?
Is this something that has developed over time? or is it a sudden occurrence? What have the kidney transplant doctors said about this?
Rosemary

Rosemary, Thank you so much for your reply. I will definitely look into these.
I am doing quite well. It'seems as if I am 5 months pregnant but no morning sickness. :-). Otherwise I am in excellent health at this point. I hope you are doing well too.

@jolinda

HI @elevinton
Although I also had a transplant (due to PKD) I have not experienced any liver symptoms like you have described. Sounds rough, I'm sorry you are going through this. I'm hoping others who know more on this topic will jump in and give you and the rest of us some insight so we all gain some new knowledge. In the mean time welcome to the group and thanks for bringing up this important issue.
Jolinda

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Thanks so much

@elevinton

Rosemary, Thank you so much for your reply. I will definitely look into these.
I am doing quite well. It'seems as if I am 5 months pregnant but no morning sickness. :-). Otherwise I am in excellent health at this point. I hope you are doing well too.

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Additionally, this has happened over time. I have been quite overweight and in the last 3 years lost 75 lbs. Now it is clear how large the liver really is. The Dr's I have consulted so far don't have any solution. I am convinced there must be something that can help me. I am on a mission!!!

@elevinton

Additionally, this has happened over time. I have been quite overweight and in the last 3 years lost 75 lbs. Now it is clear how large the liver really is. The Dr's I have consulted so far don't have any solution. I am convinced there must be something that can help me. I am on a mission!!!

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Hello @elevinton

While I have never had a transplant, I really appreciate the determination and proactive approach of those who are transplant recipients. The phrase you posted, "I am on a mission!!!" is just great and I hope that you get an answer soon.

Thank you for your support. I too hope for an answer soon too. 🙂

@elevinton,I hope that you will find some helpful and hopeful information in the links that I attached earlier.
I do have one question, though, if you are comfortable answering it. Are you being followed by your kidney transplant team? Or have you transferred your care to a (possibly more convenient) nephrologist? That might have a bearing on your 'mission' to find an answer.

The issue is I got my transplant as a paired donor in 2012. Mayo did not do paired donors then so I had my transplant at Emory in Atlanta. Team at Emory do not seem to have any answers.

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

@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.

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

@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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