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lizhope33
@lizhope33

Posts: 1
Joined: Feb 05, 2017

Sister has auto immune hepatitis

Posted by @lizhope33, Feb 4, 2017

Looking for support and/or advice on how to help my sister with her auto immune hepatitis. She had a liver transplant 2 years ago and it sounds like the disease is eating away at her new liver. She is in constant pain and has to take pain meds witch now she is addicted. She suffers from asides. She is 27 and just got out the hospital and her skin and eyes are yellow. She was diagnosed when she was 11. Help!

REPLY

Hello @lizhope33, Welcome to Mayo Clinic Connect. You’ve come to the right place for information and support!

I bet this is tough to witness your sister go through this. I’m sending good vibes of strength and peace your way!
Please review this Transplant patient story http://mayocl.in/2lcznI9 living with Hepatitis.

I would like to introduce you to community members who have discussed autoimmune hepatitis, and I hope they will return with more insight for you. Please meet @gretagean, @mommynumberone, @mrsdeecee, @avonlady38, @vmbreier, @eroch, @lady1994, @klisa24, @billylin.

I do think that you could benefit from posting in our group for caregivers https://connect.mayoclinic.org/group/caregivers/. This will be a good place for you to post questions and concerns about your sister and what you can do to help her but to also support your needs as a caregiver.

Hello @lizhope33, Welcome and thank you for contacting Mayo Connect in behalf of your sister. Her symptoms sound to be very serious. Has she seen her doctor for this? I’m tagging others who may have some knowledge – @colleenyoung, @rosemarya and @kanaazpereira. Your sisters symptoms may be related to liver failure as described on this Mayo Clinic page – http://mayocl.in/2lcEdF5. I have no medical knowledge but based on your description I would recommend having her see a doctor as soon as possible since this may be related to her recent hospital visit.

Please keep us updated…

John

@lizhope33, Your sister is fortunate to have you to look after her.
You say she just got out of the hospital. And that she is 2 years post transplant. Let me ask you this: Was her hospital stay related to her transplant? If so, those doctors should be consulted about this.
Or – was she hospitalized for another concern? And was the medical team aware of her transplant and her need to continue her antirejection medications??? Unfortunately, there are some facilities and providers who do not feel this is a necessity for life of our transplanted organs.
I urge you to take your concern to your sister’s transplant provider. She should have a post transplant nurse, or even a 24 hr phone contact. I have contacted my post transplant nurse, or my 24 hr phone number at Mayo Clinic (my transplant provider) and have always been able to speak to a person who is knowledgeable and able to give me further instructions. My primary care physician, and hospital, and even ER have contacted Mayo on occasion of need.
I pray that she will find some relief from her current discomfort.

Please act on this, and let me know how she is doing. When something acts up after a transplant, it is essential to act quickly.
Rosemary (liver/kidney)

@lizhope33, Were you able to get help for your sister’s symptoms? I hope that she is feeling better. Please let us know if you have any questions or want to talk.
Rosemary

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