Liver transplant - Let's support each other

My son is scheduled for his transplant evaluation Feb. 6 & 7. It's lovely to hear positive stories post transplant!

@frankw54 That's amazing that you were on the list for such a short time. Were you late getting on the list and then your MELD increased dramatically? I was on it for about 16 months. I am happy for you that the wait was short and it's all history now. It really is a wonderful feeling to have it behind you.

I too had HE episodes but I was fortunate in that mine were distinct and somewhat predictable. Sometimes I woke up with one. When I was prescribed xifaxan I went almost a year with no episodes at all so I never had to stop driving. The summer before my transplant (the transplant occurred in September 2016) I told my husband that I did not feel comfortable driving long distances anymore. I was worried if I felt an HE episode coming on I would be far from home.

Since my transplant I have resumed a very normal life, doing more than I had been able to do for quite a while. I am older so I work hard at staying in shape, a very worthwhile pursuit for people of all ages. You ask what to do with yourself -- that's a good start. Also, I did volunteer work for a while, and if you have the time there are even some part-time jobs out there. I am presuming you are retired since you are asking what to do with yourself.
The options are endless, depending on what you would enjoy. There are now no restrictions for you.
JK

Hi, Frankw54. I want to extend a virtual handshake and say, 'Welcome' to Mayo Connect. As a transplant recipient myself, I am thrilled to meet you! That is wonderful to hear that you are 1 year post transplant! I had to chuckle when you said you are wondering what to do with yourself. You must be feeling real good. And a wait of only 3 days is almost unheard of in my experience.

I would like to learn more about your experience. Where did you get your transplant? How did it happen that you had a 3 day wait?
What (if any) post transplant questions would you like to ask?

I also am one year post liver transplant. I know exactly where you are coming from. I was on the list only three days! Now I am wondering just what I should do with myself. This is why I joined this group. To find out what others think.

The major issue that I experienced was having high ammonia levels. I had to stop driving because the levels made me feel and appear intoxicated.

Hi, shelly63. I received my liver and a kidney (same time) at Mayo Clinic in Rochester. I can understand your fear because that is exactly what I felt during my pretransplant journey. One of my biggest fears before I was transferred to Mayo, was feeling like I was the only person with my condition, PSC (Primary Sclerosing Cholangitis) , another of those rare conditions. If there is anything that you want to ask me, I am here and I will share from my experience.

If you go to the NASH and cirrhosis of the liver that Colleen shared, you will meet others who are also frightened.- https://connect.mayoclinic.org/discussion/nash-and-cirrhosis-of-the-liver/

One thing that I have learned along the way, is that regardless of the named disease, we all experience the same fears, we share many symptoms, and we all go through the same evaluation testing. The team at Mayo is going to do all that it can to make you comfortable thru the entire process.
Which Mayo Campus is treating you?

@shelly63 That's great, Mayo of course is one of the best so I am sure they will do well by you.
JK

I go to the Mayo Clinic to get the help I need .. hopefully in the end of my evaluation for the transplant @jk

@shelly63 Are you going to a major medical center? I googled Budd-Chiari, I had never heard of it before, and I see that it is quite rare so you should be going to one, preferably one that does do liver transplants in case that turns out to be the best option. I think you need to do that and proceed from there.
I have no advice beyond that, but please be reassured knowing that there are options for you. I would presume that the first step would be seeing a hepatologist at a transplant center. That's where I started when I was diagnosed with cirrhosis.
I hope you will maintain contact, I will be interested in hearing how you make out.
JK

Hi @godlygal
I want to add my welcome. It can't be easy trying to help someone who doesn't want to be helped. Like others have mentioned, be sure to be aware of your own safety. I would like you to know about the National Domestic Violence Hotline website http://www.thehotline.org/ On this website you will find a phone number to call 1-800-799-7233 or you can use the online chat and get help without saying a word.
By calling the Hotline, you can work with professionals to find safety and solution that is right for you. And even just to create a plan.