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emkeizer (@emkeizer)

What happens following a Mayo appointment

Visiting Mayo Clinic | Last Active: Aug 23, 2019 | Replies (12)

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Hi! I am just getting myself acquainted with Mayo's Connect. I am in my 4th year, since March 12th 2016 with End-stage Liver Disease with Ascites, Varices, and Encephalopathy. My brother just died on July 17th with the same thing only not diagnosed or treated. He didn't ever see a Dr. except for something broken, a foot, an arm... I have maintained a considerably stable balance so far, however, a recent influx of symptoms have brought me right back to square One! My family are all in the southern states, TX, AZ, NM, OK, GA, MO and 1 son in NH. I Just started the transfer to Mayo process to get me from Michigan to Arizona for Tx. Wish me luck and forward any suggestions, ideas, have to's, don't's, travel, lodging, resources, , etc... anything.

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Replies to "Hi! I am just getting myself acquainted with Mayo's Connect. I am in my 4th year,..."

@tayloryvette -
Welcome to Mayo Connect. I would like to, first, offer my sincere condolences on the recent passing of your brother.

I am happy that you have joined our on-line community. I am a liver and kidney recipient, and as a volunteer mentor, I will do my best to connect you with others and to share some resources that might be helpful.

Would you care to join me in the Transplant Group? There are many discussions where members are talking about and sharing their transplant experiences. I have every confidence that they will be eager to meet you and to provide their support to you. Many are recent transplant patients who have first hand experience and knowledge about the lodging, travel at the Mayo AZ Campus. Others have transplated at other transplant centers, and have experienced the same symptoms that you have listed.

Here is a good place to begin: Liver transplant support group
All you have to do is to post a question, and then sit back and wait for replies. You are not alone. I will look for you there.

Hi @tayloryvette And welcome to Connect. @rosemarya always has good advice, I hope you do participate in the transplant group. I had a liver transplant in September 2016 and have done excellently ever since. The cause of my liver problems was non-alcoholic cirrhosis. I had edema often, particularly after traveling, and hepatic encephalopathy (HE) which was usually controlled with xifaxan.
You don’t mention the cause of your liver disease, but obviously there is a genetic component. It seems as if causes are different but the end result is the same.
I hope all goes well at Mayo for you. Let us know as things progress. By the way, I am in NH, just outside of Manchester!