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lmctif
@lmctif

Posts: 1
Joined: Oct 29, 2018

Liver support group

Posted by @lmctif, Mon, Oct 29 2:13pm

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a "Liver" support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

Liked by gurli

REPLY

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.

Liked by jeanne5009

Hi @lmctif, where do you practice social work? Is the support group an in person support group? Who is it for?

I am 6 years past my liver transplant

Support groups are very good with support. Just talking to people in the same boat as you leavens the horror of your situation.

Post transplant too.

@rrichardparker

I am 6 years past my liver transplant

Support groups are very good with support. Just talking to people in the same boat as you leavens the horror of your situation.

Post transplant too.

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@rrichardparker, I want to re-welcome you to Connect. It has been a while since I have seen you in the transplant group. I am also a transplant recipient. I joined Mayo Connect because I wanted to meet and to learn from other transplant patients. I learned that as a recipient, I can share my own experiences to help others along their own journey. I have a feeling that you have learned a lot from your transplant, as well as how to manage your self care for 6 post transplant years.

Are you interested in supporting others who are like yourself?
I invite you to look thru the transplant discussions that are happening because there have been a lot of new members and conversations. You are always welcome to join in anywhere, with your own comments, questions, and helpful suggestions.
How can I help you get started?

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

@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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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?

@rosemarya
Just wanted to wish a Happy Thanksgiving to all my Mayo Connect friends. We all get it better than most..I am very thankful for having this group to share with and wish you all good things for the holidays. There is so much to be thankul for….

Liked by cmael

@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

Jump to this post

@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.

@jeanne5009

@rosemarya
Just wanted to wish a Happy Thanksgiving to all my Mayo Connect friends. We all get it better than most..I am very thankful for having this group to share with and wish you all good things for the holidays. There is so much to be thankul for….

Jump to this post

Happy Thanksgiving EveryDay to all of the Mayo Connect Transplant Members who generously share their love and messages of hope and support with each other.

Have you seen the discussion post: Just Want to Talk: I never thought I'd be thankful for …
https://connect.mayoclinic.org/discussion/i-never-thought-id-be-thankful-for/?pg=1#chv4-comment-stream-header

I invite all of you to click on the link, and share your ideas!

@gaylea1

@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.

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@gaylea1 Hello there. I am sorry fir the slow response. In my haste in joining this group, I forgot to bookmark the site, and lost the page. Please feel free to reach out to me anytime. I hope to have the support group test run in January. If you would like to chat about anything, please contact me here at healthylivering@gmail.com

That is the email fir the group, but it is just being rolled out.

All the best!

@rosemarya I recently was informed by my Liver Transplant Team that they no longer do Living Donor Liver Transplants at Mayo Clinic Jacksonville. It sort of caught me off guard and I completely forgot to ask if that was also the same at the other two Mayo Clinic locations. Does anyone on here know?

@mathewsw

@rosemarya I recently was informed by my Liver Transplant Team that they no longer do Living Donor Liver Transplants at Mayo Clinic Jacksonville. It sort of caught me off guard and I completely forgot to ask if that was also the same at the other two Mayo Clinic locations. Does anyone on here know?

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Matthewsw, Welcome. I want to ask @keggebraaten or @NatalieR for their input.
Are you currently on the transplant waiting list in Mayo JAX?

@parmcat

@gaylea1 Hello there. I am sorry fir the slow response. In my haste in joining this group, I forgot to bookmark the site, and lost the page. Please feel free to reach out to me anytime. I hope to have the support group test run in January. If you would like to chat about anything, please contact me here at healthylivering@gmail.com

That is the email fir the group, but it is just being rolled out.

All the best!

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@parmcat Hello! I finally got my transplant last Wed night at UH. Lots to learn!

@gaylea1

@parmcat Hello! I finally got my transplant last Wed night at UH. Lots to learn!

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Awesome!!! I am so happy for you!!!!!!!

@parmcat

Awesome!!! I am so happy for you!!!!!!!

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Parmcat, I am excited to read about your plan to begin a support group in your area. I love your plan to meet on clinic day.

I do not have a support group in my area, but there is one at the transplant center 50 miles away. It is only for those who transplanted there. That excludes me. Like you, I found Mayo Connect when I stumbled on it when I was looking for someone who had transplanted for same liver disease as me.

I see that you have a big day coming up! What do you plan to do to honor the day?

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