1. < Transplants

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.

jackie421blfdgurl | @jackie421blfdgurl | Mar 17, 2022
In reply to @cybele65 "I have a strong support system in place. My wife has been a rock and her..." + (show)
@cybele65

I have a strong support system in place. My wife has been a rock and her sons are there for me whenever I need something. My neighbors have also told me they will be there for me, all I need to do is ask. Thank you for taking the time to write me back. A lot of people know of my condition, having said that, they really do not understand the physical and emotional affects on me. Unfortunately most people hear cirrhosis or liver disease and they automatically think I am a drunk and did this to myself. Mine was caused by a prescription medication. I will check out the link, thanks for sharing it.

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Hello. In October 2022 it will b 2 yr anniversary for my liver transplant. Then in June of last yr, I had a hernia repair.So I guess to say I went thru heaven and hell and thankfully back to heaven. When I told some people of my transplant they looked so surprised! Yes u r right it is a disease that is stigmatized
Almost makes u embarrassed to tell people u had one...no I did not drink..no I did not do drugs .no I did not have hepatitis.it was nash undiagnosed for years and it kept getting worse n worse top of that my doctor ignored my symptoms for years. Now I tell everyone and am so proud. My medical team at Mt.Sinai was and is remarkable. Hang in there they know what they r doing. U will b fine. God bless u ....jackie

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jackie421blfdgurl | @jackie421blfdgurl | Mar 17, 2022
In reply to @rosemarya "@cybele65, As you are learning, this road to transplant can be complicated. And there is not..." + (show)
@rosemarya

@cybele65, As you are learning, this road to transplant can be complicated. And there is not one experience that is like another in the progression of liver disease and advancement toward transplant. However, we all experience the dread and anxiety that we face. You are absolutely correct to make your commitment to hold on to hope and strive to maintain a positive outlook. Your good health is going to be working on your favor as you proceed.
I did not have a TIPS procedure, but had repeated parentheses every 8-10 days. I wore X-large sweat pants with a cinched draw string on those days after paracentesis.
It is a step in the right direction to hear that your transplant team is considering other factors that can affect the MELD score.
I was 60 when I received my transplant in 2009. I had a progressive liver disease Primary Sclerosing Cholangitis (PSC) for which there is no cure. I knew that a transplant could be in my future, but it wasn't real until I was sent to the Transplant department when my symptoms and liver function numbers began a sudden rise. My MELD score wasn't too high when I was listed, but it rose quickly as my disease progressed and my health began to fail. I endured many complications along the way. Like you, I had been a healthy and active individual with no comprising conditions. My doctors credit that with helping me along the way.

Upon looking back at an article that I wrote in 2017, I found this statement: "For me, staying positive meant that I had to accept the ever-changing events in my life, one long day at a time." I am sharing the link to "Staying Positive While Waiting for a Transplant" https://connect.mayoclinic.org/blog/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

cybele65, Do you have friends or family nearby to support you? Have you got someone in mind to be a caregiver which is required when listed for a transplant?

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Hi Rosy girl. Hope all is well. I just read your reply u are amazing .I am good. Going for my blood on Saturday..I go once a month per doctors.Going to New York end of April for ct scans and MRI...each day is a gift
And no one knows this better than us transplants....have a great day🌞🌞jackie

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 17, 2022
In reply to @jackie421blfdgurl "Hi Rosy girl. Hope all is well. I just read your reply u are amazing .I..." + (show)
@jackie421blfdgurl

Hi Rosy girl. Hope all is well. I just read your reply u are amazing .I am good. Going for my blood on Saturday..I go once a month per doctors.Going to New York end of April for ct scans and MRI...each day is a gift
And no one knows this better than us transplants....have a great day🌞🌞jackie

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@jackie421blfdgurl, I almost missed your post because I don't go by Rosy😉. Anyway, Your enthusiasm says it all! We are blessed after having been gifted with a life thru organ transplant.
Is the April trip to New York part of your routine follow-up care? I have graduated from a 1 month routine lab to a 3 month schedule. And my friends are so jealous of the complete follow-up care / monitoring that I receive from my PCP and my transplant center!

Have you seen this discussion: Snapshots of hope: Life on the other side of transplant. Will you join me and others to "Show me your Snapshot of hope! What photo do you have that wouldn’t exist without your transplant? Do you have a snapshot or a few words to share there?
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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1 reply
jackie421blfdgurl | @jackie421blfdgurl | Mar 17, 2022
In reply to @rosemarya "@jackie421blfdgurl, I almost missed your post because I don't go by Rosy😉. Anyway, Your enthusiasm says..." + (show)
@rosemarya

@jackie421blfdgurl, I almost missed your post because I don't go by Rosy😉. Anyway, Your enthusiasm says it all! We are blessed after having been gifted with a life thru organ transplant.
Is the April trip to New York part of your routine follow-up care? I have graduated from a 1 month routine lab to a 3 month schedule. And my friends are so jealous of the complete follow-up care / monitoring that I receive from my PCP and my transplant center!

Have you seen this discussion: Snapshots of hope: Life on the other side of transplant. Will you join me and others to "Show me your Snapshot of hope! What photo do you have that wouldn’t exist without your transplant? Do you have a snapshot or a few words to share there?
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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Hi again my test in April is for my 6mo ck up.i will see what they say after test when to come back. I don't know how to post pictures..sorry..if u lead me I will follow directions....

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 17, 2022
In reply to @jackie421blfdgurl "Hi again my test in April is for my 6mo ck up.i will see what they..." + (show)
@jackie421blfdgurl

Hi again my test in April is for my 6mo ck up.i will see what they say after test when to come back. I don't know how to post pictures..sorry..if u lead me I will follow directions....

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Jackie, when you want to make a comment or a reply, in addition to text, you have option to Add photo/Files. So go ahead and click on that box and you will see an area that says “add your photos here”.
If you click there, you can select your photo from your files, or even take one. *You will get a notice if image will not fit. Otherwise it should download.
I’m texting while husband is driving. I hope this makes sense! Let me know if you need more help.

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jackie421blfdgurl | @jackie421blfdgurl | Mar 20, 2022

Thanks .yes I see the words photo I shall try tomorrow

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 22, 2022

Spring is here! At least that is what is printed on my Calendar for March 20.

So I want to extend my wishes and hopes for a Happy Spring for anyone who is involved in the liver transplant process. 13 years ago, during winter to springtime of the year, I was at the most critical time of my transplant journey. It was also the most beautiful time of my life as I was blessed to get my transplant. I received support from my family and friends, my doctors, nurses, everyone on the transplant team, and the people I met while staying at the Gift of Life transplant House in Rochester MN. Mayo Connect did not yet exist in 2009. Today, I am honored to have the honor of meeting so many transplant patients on Connect. And I am honored to meet you who are reading this post.

Do you know that March 30 is National Doctor's Day? Here is a discussion where you can honor someone(s)! Located in the Just Want to Talk Group > Who will you honor on National Doctors’ Day?
https://connect.mayoclinic.org/discussion/who-will-you-honor-on-national-doctors-day/
Springtime is a perfect time to share your snapshot in words or photo in this Transplant Discussion: Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
What is going on with you this Spring?

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jackie421blfdgurl | @jackie421blfdgurl | Mar 26, 2022
In reply to @jackie421blfdgurl "Thanks .yes I see the words photo I shall try tomorrow" + (show)
@jackie421blfdgurl

Thanks .yes I see the words photo I shall try tomorrow

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Found my photo
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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 26, 2022

@jackie421blfdgurl - You did it !!!! You look so very happy with your furry buddy.

Do you want to post it in the discussion - Snapshots of hope: Life on the other side of transplant?
Here's how to do it:
1) click on the link below to go directly to the discussion
2) Read and enjoy the snapshots of hope
3} Go to Comment box
4) say a few words of hope, and repeat the steps you used to post your picture here 😉
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

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btg | @btg | Mar 27, 2022
In reply to @rosemarya "@btg Brian, I am soooo happy to hear good news about your progress. And you are..." + (show)
@rosemarya

@btg Brian, I am soooo happy to hear good news about your progress. And you are absolutely correct that your good health is going weigh heavily in your favor as you look forward to eventual listing and surgery. My advice, if you were to ask, is to stay active and eat healthy foods.
I hope that gentle breezes will be with you as you set sail!
Brian, please send updates.

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Well, I have a date in Phoenix. My first VERY full day of appointments is April 18th. We’ll leave a couple days earlier so we can check in and get settled. Looking like at least a full week, likely a little bit longer to complete the assessment process at Mayo. They said that with my MELD score where it is they will more than likely ask us to stay in hopes of a transplant soon thereafter. I have a few more tests out here for them then we put the sails up and go. I’ll update when I can, and thank you all for not only being here but for your support. Be well and safe until then…

Bryan

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