Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

@bigjoek

I was hoping to slip in a song or two that I wrote about organ donation, but.... files are just a bit too big....I tried!!

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You could include a SoundCloud link to your songs.
Wow! You have certainly traveled a path not often taken. It sounds like you have made a trail in your woods and breathed in the challenges. Thank you for sharing. Wishing you much success and lots of music to share and keep you going.

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@parrot53

You could include a SoundCloud link to your songs.
Wow! You have certainly traveled a path not often taken. It sounds like you have made a trail in your woods and breathed in the challenges. Thank you for sharing. Wishing you much success and lots of music to share and keep you going.

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I tried to include one of my songs on SoundCloud, but it was declined, I think because I hadn't been here long enough. I'll try again with this reply! Thank you!
Also thank you for your perspective on my path! It has been a long interesting one to say the least!
Here (hopefully) is the link!!
soundcloud.com/joe-kralicek/hero-revisited (you will have to copy this and add the HTTPS before the link and it should work)

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@bigjoek

I tried to include one of my songs on SoundCloud, but it was declined, I think because I hadn't been here long enough. I'll try again with this reply! Thank you!
Also thank you for your perspective on my path! It has been a long interesting one to say the least!
Here (hopefully) is the link!!
soundcloud.com/joe-kralicek/hero-revisited (you will have to copy this and add the HTTPS before the link and it should work)

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Perfect. This link works fine, I just clicked its . Nice song. Thank you for sharing.

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@parrot53

Perfect. This link works fine, I just clicked its . Nice song. Thank you for sharing.

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@parrot53 thank you! All but the drums is played by me! I'm my own band... lol

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@rosemarya

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?

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I am 5 years post transplant. Stumbled on this several years later. I think it would be helpful if mayo social workers or nurse coordinators gave people this specific information. I was not given it. I remember one doctor mentioned striking up conversations with other people in the waiting rooms to help people connect. It's hard to do. If there is this around, it would be awesome for more to know. I still learn so much here and get ideas of what to bring up to my care team

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@mkhogan

I am 5 years post transplant. Stumbled on this several years later. I think it would be helpful if mayo social workers or nurse coordinators gave people this specific information. I was not given it. I remember one doctor mentioned striking up conversations with other people in the waiting rooms to help people connect. It's hard to do. If there is this around, it would be awesome for more to know. I still learn so much here and get ideas of what to bring up to my care team

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@mkhogan - Greetings today from a rainy central Kentucky! I want to say that I totally agree with your assessment that it would be awesome if more became aware of the benefits connecting with others.
I received my transplant in 2009, before Mayo Connect existed, and like you, I discovered it during one of my own on-line searches since there were no support groups in my area. I have enjoyed being a part of the conversations on Connect for over 10 years, and have proudly watched it grow as technology has become more available to the world. When in Rochester during my annual appointment, I have seen Mayo Connect Brochures at information desks and in the waiting areas, including some in transplant areas. Due to space availability and multitude of topic specific brochures, these are not placed everywhere. Have you seen the kiosks in the main lobby area? Mayo Connect is on it! And more recently is on the Mayo Clinic Patient portal. I think a brochure might be included in the take-home information, too.

During my time on Connect, I have been blessed to meet and interact with organ transplant patients from all over the world. I like to think of all us sitting around a kitchen table with cup of coffee or tea and chatting while getting and receiving support from each other. So, @mkhogan, I am inviting you to pour a cup of coffee or tea and join us. What is going on with you and your precious liver? What is something that you learned on Connect that is most helpful for you? Any updates you would like to share since your most recent comments?

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@rosemarya

@mkhogan - Greetings today from a rainy central Kentucky! I want to say that I totally agree with your assessment that it would be awesome if more became aware of the benefits connecting with others.
I received my transplant in 2009, before Mayo Connect existed, and like you, I discovered it during one of my own on-line searches since there were no support groups in my area. I have enjoyed being a part of the conversations on Connect for over 10 years, and have proudly watched it grow as technology has become more available to the world. When in Rochester during my annual appointment, I have seen Mayo Connect Brochures at information desks and in the waiting areas, including some in transplant areas. Due to space availability and multitude of topic specific brochures, these are not placed everywhere. Have you seen the kiosks in the main lobby area? Mayo Connect is on it! And more recently is on the Mayo Clinic Patient portal. I think a brochure might be included in the take-home information, too.

During my time on Connect, I have been blessed to meet and interact with organ transplant patients from all over the world. I like to think of all us sitting around a kitchen table with cup of coffee or tea and chatting while getting and receiving support from each other. So, @mkhogan, I am inviting you to pour a cup of coffee or tea and join us. What is going on with you and your precious liver? What is something that you learned on Connect that is most helpful for you? Any updates you would like to share since your most recent comments?

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Thank you for your response. I have been enjoying connect. I've learned so many things and it has definitely opened up options to me for meds and treatments doctors don't always talk about. Give me something to have in my bag, do yo speak when I talk w doctors. Sometimes frustration is doctors don't seem to bring up all options and nice for me to have questions I can bring yo them. Especially since you sometimes onlysee them once yearly. I am doing good. I have some portal hypertension even with new liver but it's controlled. Feel good every day and active and traveling lots. I have much to br grateful for

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@mkhogan

Thank you for your response. I have been enjoying connect. I've learned so many things and it has definitely opened up options to me for meds and treatments doctors don't always talk about. Give me something to have in my bag, do yo speak when I talk w doctors. Sometimes frustration is doctors don't seem to bring up all options and nice for me to have questions I can bring yo them. Especially since you sometimes onlysee them once yearly. I am doing good. I have some portal hypertension even with new liver but it's controlled. Feel good every day and active and traveling lots. I have much to br grateful for

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@mkhogan, You have made my day! In am grinning-to-ear upon hearing that you are feeling good and even traveling again! As a transplant recipient, I am well aware of the benefits that you have received by following Connect. I wish that Mayo Connect had been available when I was going thru the process 15 yearsago!

mkl, I am back to traveling, too, since trasplant. My husband and I like to visit national parks for the scenery and hiking. What kind of travel do you like?

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I love traveling. Did alot in traveling in the states with my daughter and mom awhile back. My mom passed couple of years back. My daughter and I started back traveling recently. We went to Italy last year for a wonderful trip. Fist time to Europe for her. She lived Europe so we just booked Amsterdam, Paris and London this June. We have been to Mexico a few times. I rented a place in isla mujeres this past winter for about 6 weeks. Have family there and have stayed with them for several of my trips there but this year stayed longer and got my own place. So many wonderful places hear also. I'm glad you are enjoying your gift and doing well.

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I have had 2 liver transplants over 24 years now. If you want to discuss something then add your questions. There are many posts and it's getting to big to even try and follow.

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