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.

jeanne5009 | @jeanne5009 | Oct 20, 2019
In reply to @leahd "Hi everyone :) my transplant was 4 years ago on Nov 16 (overshare warning, just in..." + (show)
@leahd

Hi everyone 🙂 my transplant was 4 years ago on Nov 16 (overshare warning, just in case...I don't want to take up anyone's time...never posted on really anything before support wise) ~ i'm turning 40 this year...my transplant was a little unusual. I went from healthy to complete liver failure and kidney failure in 3 weeks time. I was at the time defending my Phd proposal...and somehow passed that, went to a meeting with my dad driving to convince my mentor and head of student affairs to let me continue that semester only to go directly to the ER on campus right after. 4 months later I was discharged, 7 surgeries, a transplant, and a month on life support later. I know i'm young for an adult to go through this. my kidneys recovered initially but lately they are acting up again. Since my transplant I'm in and out of the hospital about every 2-3 months. My pancreas is now causing the main issues. I'll never forget what one of my dr.s said the day I agreed to a transplant in ICU - the reality is you aren't getting cured. you are trading one disease for another. So when I got off of official medical leave from my school I completely restarted my PhD dissertation to be on liver transplantation. I figure if it's going to eventually get me, I want to know as much about it as I can. I'm not really sure what to expect here....I've accepted my cycle of in and out of the hospital. What shamefully I'm struggling with is writing a letter to my donor's family. I just don't know what to say to them that would make them think I deserved a longer chance than someone else. soooo...yea ...hello...this is me. our hospital has zero options for transplant support and the longer time passes the more I realize I need to be able to talk to other people that have been through this. <3

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Leahd@
You are sooo in the right place. The people here will inspire you. If you read some of our stories, worries, and yes triumphs you will quickly see you are deserving of all that can be given. The best part is that you are young to have this life knowledge and that will enable you to encourage those behind you. You are admired by those ahead. Keep sharing!

REPLY
rowdyramsey | @rowdyramsey | Oct 18, 2019
In reply to @gaylea1 "@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and..." + (show)
@gaylea1

@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.

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What do u mean by”symptoms right before surgery?” Depends on how sick u are. But you have no increase in symptoms before surgery. Maybe just real nervous. I had a transplant 4 years ago. I know what u r going through! Are u on the transplant list? Do uspend a lot of time in the hospital? Just trying to figure out how far u are along! Know what I mean!?

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 18, 2019
In reply to @leahd "thank you Rosemary :) thank you for the direction!" + (show)
@leahd

thank you Rosemary 🙂 thank you for the direction!

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@leahd, Good morning. I hope that my greeting finds the sun shining for you today.
I have located a discussion that I want to share from the Transplant Group Discussion. It is titled - "Letter to donor family: I'm not sure how to start" I have a deep respect for this member who bravely shared her emotional and couragious message. In this discussion you will find more information about writing your letter. The letter does not need to be lengthy. Let me know if you have any questions. You can easily access it if you click on the link.
https://connect.mayoclinic.org/discussion/letter-to-donor-family/

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leahd | @leahd | Oct 17, 2019
In reply to @rosemarya "@leahd, Welcome to Connect. I am happy that you have felt comfortable to share your transplant..." + (show)
@rosemarya

@leahd, Welcome to Connect. I am happy that you have felt comfortable to share your transplant story here. Mayo Connect is a safe place where you can share your experiences with others, and give and receive support. You can ask and answer others, or you can read along. I am a liver and kidney recipient I transplanted 10 years ago at age 60. I am interested in hearing more about you.
This must have been a frightening period of your life. Do you know what caused the liver and kidney failure? or why it was so sudden?

Here is a transplant discussion - Writing to Your Donor's Family. - You will see what some members have to say about letters to their donor and I invite you to join in the conversation As you read the responses, I encourage you to be open for ideas that others have discussed before you. Go ahead and ask a question or make a comment. Please do not let yourself feel guilty about delaying your letter. https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/

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thank you Rosemary 🙂 thank you for the direction!

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 17, 2019
In reply to @leahd "Hi everyone :) my transplant was 4 years ago on Nov 16 (overshare warning, just in..." + (show)
@leahd

Hi everyone 🙂 my transplant was 4 years ago on Nov 16 (overshare warning, just in case...I don't want to take up anyone's time...never posted on really anything before support wise) ~ i'm turning 40 this year...my transplant was a little unusual. I went from healthy to complete liver failure and kidney failure in 3 weeks time. I was at the time defending my Phd proposal...and somehow passed that, went to a meeting with my dad driving to convince my mentor and head of student affairs to let me continue that semester only to go directly to the ER on campus right after. 4 months later I was discharged, 7 surgeries, a transplant, and a month on life support later. I know i'm young for an adult to go through this. my kidneys recovered initially but lately they are acting up again. Since my transplant I'm in and out of the hospital about every 2-3 months. My pancreas is now causing the main issues. I'll never forget what one of my dr.s said the day I agreed to a transplant in ICU - the reality is you aren't getting cured. you are trading one disease for another. So when I got off of official medical leave from my school I completely restarted my PhD dissertation to be on liver transplantation. I figure if it's going to eventually get me, I want to know as much about it as I can. I'm not really sure what to expect here....I've accepted my cycle of in and out of the hospital. What shamefully I'm struggling with is writing a letter to my donor's family. I just don't know what to say to them that would make them think I deserved a longer chance than someone else. soooo...yea ...hello...this is me. our hospital has zero options for transplant support and the longer time passes the more I realize I need to be able to talk to other people that have been through this. <3

Jump to this post

@leahd, Welcome to Connect. I am happy that you have felt comfortable to share your transplant story here. Mayo Connect is a safe place where you can share your experiences with others, and give and receive support. You can ask and answer others, or you can read along. I am a liver and kidney recipient I transplanted 10 years ago at age 60. I am interested in hearing more about you.
This must have been a frightening period of your life. Do you know what caused the liver and kidney failure? or why it was so sudden?

Here is a transplant discussion - Writing to Your Donor's Family. - You will see what some members have to say about letters to their donor and I invite you to join in the conversation As you read the responses, I encourage you to be open for ideas that others have discussed before you. Go ahead and ask a question or make a comment. Please do not let yourself feel guilty about delaying your letter. https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/

REPLY
1 reply
leahd | @leahd | Oct 17, 2019

Hi everyone 🙂 my transplant was 4 years ago on Nov 16 (overshare warning, just in case...I don't want to take up anyone's time...never posted on really anything before support wise) ~ i'm turning 40 this year...my transplant was a little unusual. I went from healthy to complete liver failure and kidney failure in 3 weeks time. I was at the time defending my Phd proposal...and somehow passed that, went to a meeting with my dad driving to convince my mentor and head of student affairs to let me continue that semester only to go directly to the ER on campus right after. 4 months later I was discharged, 7 surgeries, a transplant, and a month on life support later. I know i'm young for an adult to go through this. my kidneys recovered initially but lately they are acting up again. Since my transplant I'm in and out of the hospital about every 2-3 months. My pancreas is now causing the main issues. I'll never forget what one of my dr.s said the day I agreed to a transplant in ICU - the reality is you aren't getting cured. you are trading one disease for another. So when I got off of official medical leave from my school I completely restarted my PhD dissertation to be on liver transplantation. I figure if it's going to eventually get me, I want to know as much about it as I can. I'm not really sure what to expect here....I've accepted my cycle of in and out of the hospital. What shamefully I'm struggling with is writing a letter to my donor's family. I just don't know what to say to them that would make them think I deserved a longer chance than someone else. soooo...yea ...hello...this is me. our hospital has zero options for transplant support and the longer time passes the more I realize I need to be able to talk to other people that have been through this. <3

REPLY
4 replies
gaylea1 | @gaylea1 | Oct 1, 2019
In reply to @livertrex "I missed my meds at 8am. It is a 11am. I wonder if I should still..." + (show)
@livertrex

I missed my meds at 8am. It is a 11am. I wonder if I should still take
them?

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@livertrex I was told that if you forget your pill(s) anti-rejection that we have up to 3 hours to take our meds after their due to be taken. After 6 hours wait until our next dose is due. Hope this is helpful.

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livertrex | @livertrex | Oct 1, 2019
In reply to @rosemarya "It sounds like you are only 3 hrs late. The return call might suggest a small..." + (show)
@rosemarya

It sounds like you are only 3 hrs late. The return call might suggest a small time adjustment-it not. I am certainly not qualified to make that decision for you.
Let me know what they say when they call.
I hope you enjoy the rest of your day.

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They called me back, and everything&apos;s fine, I was correct in what I had
interpreted on the internet and as long as I don&apos;t double up the dose.
Thanks for your help

REPLY
livertrex | @livertrex | Oct 1, 2019
In reply to @rosemarya "It sounds like you are only 3 hrs late. The return call might suggest a small..." + (show)
@rosemarya

It sounds like you are only 3 hrs late. The return call might suggest a small time adjustment-it not. I am certainly not qualified to make that decision for you.
Let me know what they say when they call.
I hope you enjoy the rest of your day.

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Thanks

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 1, 2019

It sounds like you are only 3 hrs late. The return call might suggest a small time adjustment-it not. I am certainly not qualified to make that decision for you.
Let me know what they say when they call.
I hope you enjoy the rest of your day.

REPLY
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