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Liver transplant - Let's support each other

Transplants | Last Active: 4 days ago | Replies (1606)

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@parmcat

Hi there,

I just stumbled on this thread. I am almost 1 year post liver transplant (Dec 7). I am in London, Ontario, Canada. Since I have had a profound change in my life, I feel the need to give back. There are NO in person live support groups anywhere in my area. My wife and I have decided to develope a group to offer to the people affected by this illness.

We are going to run it monthly, at the hospital on clinic days, so people can wander in casually when they are already at the hospital. Initially, it will be an open group with no set structure and will be consumer driven.

I am curious to hear what your group looks like and how it is being received

Feel free to contact me anytime

All the best

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Replies to "Hi there, I just stumbled on this thread. I am almost 1 year post liver transplant..."

Hi, and Welcome to Connect. I am happy that you have joined this transplant discussion group after stumbling upon it! Congratulations on your upcoming liver transplant 1st anniversary! Do you have any plans to celebrate, or honor the special day?
I am a liver/kidney recipient. I found Mayo Connect when I was looking for other people who had either transplanted, or who had my disease (PSC). Like, you, there was no one in my vicinity.
I commend you and your wife for your joint plan to share with others in your area who are affected by liver disease. I don't have any 1st hand support group experience to share. When do you plan to get it activated?

I invite you and also any members of your group, to come visit Mayo Clinic Connect. I welcome you to join in and to share your experience with others from nearby and distant places. As you have already indicated - It can be lonely out there. The purpose of Connect is to share our experiences with others, and to support and encourage others along the way.

This and That and Talk - My Transplant
https://connect.mayoclinic.org/discussion/this-and-that-and-talk-my-transpant/

Living Life after your Transplant
https://connect.mayoclinic.org/group/transplants/tab/discussions/?pg=6#group-92-activitystream

I recommend that you browse the Newsfeed posts in the Transplant Pages.
https://connect.mayoclinic.org/page/transplant/

@parmcat, Do you intend this support group to be at the hospital where you transplanted?

@parmcat Hello! Hi am in London Ontario waiting for a transplant. I have never see anyone on this site before from our area. I joined connect at Mayo about a year ago as I had no support group here in London. This site has been helping me along my journey. They have been invaluable in support and advice. I was put on the wait list July 10th 2016. My MELD score is 30+ and am still waiting for a match. I would love to hear about your experiences with the transplant clinic at UH. I would love to hear frm you.

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.

Hi Parmcat. Thank you for sharing ur joirney. My husband is told to be prepared for liver transplant due to his liver cancer. We didnt yet apply to waiting list. My question now is how often do you have to visit clinic after transplant is done. Is there like mandatory observation, tests u have to do every week, month or some in clinic procedures?! My husband is USA citizen, but we live in a different country. So my concern now do we have to stay in USA all the time or after transplant we can go back.

I am 15 months post TX at London UHSC. Good to hear you are trying to get something going there. The peer support is limited in our area but certainly needed. If I wasn't 5 hours away I'd come on by. Maybe next time I need to visit in person.