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Liver transplants and splenomegaly

Posted by erin85 @erin85, Apr 9 10:51am

Good Morning. My sister age 34 has Joubert's syndrome with splenomegaly, kidney disease and liver disease. She had a kidney transplant over 20 years ago and is now being put on a liver transplant list. Has anyone had to do a liver transplant and splenectomy? Is this something that could be done? Information on either of the processes would be greatly apprecitated.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 10 11:08am

@erin85, Good Morning to you. As I read your comment, your sister has already received a kidney transplant and now is being put on the liver transplant list. Is that correct? I had a simultaneous liver and kidney transplant, but not familiar with splenomegaly. As a patient, I do know that being put on the liver transplant list, or any other organ transplant list, requires a thorough medical examination - by the transplant team - that looks at any and all possible complicating health issues that could interfere with chances for a successful transplant surgery. Often, a patient will need to undergo treatment or corrective procedures before qualifying to be eligible to be placed on the UNOS transplant list.

Your concern about the liver transplant and splenectomy is a valid one, and it is one that is best answered by her medical team. Is your sister undergoing the evaluation testing now, or is it being considered? Have you discussed this with her? What do you think about accompanying her to her next appointment and getting the doctor's opinions?

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1 reply
erin85 | @erin85 | Apr 10 1:14pm
In reply to @rosemarya "@erin85, Good Morning to you. As I read your comment, your sister has already received a..." + (show)
@rosemarya

@erin85, Good Morning to you. As I read your comment, your sister has already received a kidney transplant and now is being put on the liver transplant list. Is that correct? I had a simultaneous liver and kidney transplant, but not familiar with splenomegaly. As a patient, I do know that being put on the liver transplant list, or any other organ transplant list, requires a thorough medical examination - by the transplant team - that looks at any and all possible complicating health issues that could interfere with chances for a successful transplant surgery. Often, a patient will need to undergo treatment or corrective procedures before qualifying to be eligible to be placed on the UNOS transplant list.

Your concern about the liver transplant and splenectomy is a valid one, and it is one that is best answered by her medical team. Is your sister undergoing the evaluation testing now, or is it being considered? Have you discussed this with her? What do you think about accompanying her to her next appointment and getting the doctor's opinions?

Jump to this post

She had the kidney transplant previously and that is working good but nowbeing put on the liver transplant list. She has appointments to begin the testing in the next couple of weeks. My parents are her caregivers and will be going to the appointments with her. I was just curious if there were others out there with similar issues.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 4 days ago
In reply to @erin85 "She had the kidney transplant previously and that is working good but nowbeing put on the..." + (show)
@erin85

She had the kidney transplant previously and that is working good but nowbeing put on the liver transplant list. She has appointments to begin the testing in the next couple of weeks. My parents are her caregivers and will be going to the appointments with her. I was just curious if there were others out there with similar issues.

Jump to this post

@erin85, I am thinking about you, and can imagine how difficult this must be for you to have this and other unanswered questions. I hope that your mom and dad will be able to communicate some information to you that will be meaningful. The medical language can be awfully confusing, and sometimes difficult to put into everyday language. I was transplanted at Mayo Rochester, and they (along with all of the Mayo locations) have lots of printed information that is available for patients and caregivers. So if she is at Mayo, ask her to get you some information.
Give your sister a gentle hug. And anytime you have a question or just want to talk about the transplant process, don't hesitate to ask.

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