Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

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!

@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

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@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's fine, I was correct in what I had
interpreted on the internet and as long as I don't double up the dose.
Thanks for your help

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@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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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

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, 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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@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!

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@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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@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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@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!

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@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 I found writing that letter to be one of the most difficult things I ever did. I did it though and about a year later I heard back from my donor's parents. I had a guideline that had been given to me before I left the hospital. If I still have it around I will scan it in and attach it to a later message.
Please do not feel that you are less deserving than someone else. I felt that too somewhat because I was two days short of 69 when I had my transplant. I thought that maybe it should have gone to someone younger. It didn't so I am here, and healthy, and my son and daughter celebrate that. I am so very happy that I will have more years with them.
JK

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@rowdyramsey

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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@rowdyramsey @gaylea1 My symptoms did increase dramatically in the last 4 – 6 weeks prior to my transplant. I was doing extremely well most of the time, no real effects except isolated HE episodes, but then I suddenly got severe edema and ascites. I gained about 35 pounds of fluid weight. During the summer I was being told it would probably be November before I would get a transplant. I could not imagine going that long feeling as I did but then on September 22 I got the call and I had my transplant on September 23.
JK

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@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, I have been off line and I want to check in with you now that I am back to my laptop! First and foremost-It is not even possible to overshare. Your background is your story and it is a remarkable testimony to your strength and determination to rise above the difficulties that have surrounded you. Do you know what an inspiration that you are? Even if you don't hear a response, I can assure that your example is helping to lift someone who is enduring a similar journey.

I would enjoy hearing from you and chatting with you. I also find that is is helpful to be able to talk to others who have been thru this, and who are going thru this. How are you doing as you approach an anniversary? Do you do anything to celebrate – dinner, new outfit, day off to pamper yourself?

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I came to Rochester after my son urged me to. There a week, I learned more about cirrhosis of the liver, plus had more procedures than I had in two months in Western North Carolina. My gastroenterologist (East Tennessee) was content to have me lose water weight via diuretics, and monitoring with periodic blood panels. He told me no transplant center would even talk to me if I had consumed alcohol within the year (I quit entirely in early July). He didn’t give me a MELD score and downplayed knowing the cause of my liver disease (what will that change? he asked). That week at Mayo was a breath of fresh air for me, as well as the nod to take responsibility of my situation and to be proactive.

Although I live too far from any of the Mayo locations, but Duke Liver Transplant Center is 4 hours away by car. I’ve been invited to go through their 3-day screening and education for program mid-November.

So thankful my son insisted we go to Rochester. Reminds me that even doctors aren’t always right.

Push on!

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@skipmarsliver

I came to Rochester after my son urged me to. There a week, I learned more about cirrhosis of the liver, plus had more procedures than I had in two months in Western North Carolina. My gastroenterologist (East Tennessee) was content to have me lose water weight via diuretics, and monitoring with periodic blood panels. He told me no transplant center would even talk to me if I had consumed alcohol within the year (I quit entirely in early July). He didn’t give me a MELD score and downplayed knowing the cause of my liver disease (what will that change? he asked). That week at Mayo was a breath of fresh air for me, as well as the nod to take responsibility of my situation and to be proactive.

Although I live too far from any of the Mayo locations, but Duke Liver Transplant Center is 4 hours away by car. I’ve been invited to go through their 3-day screening and education for program mid-November.

So thankful my son insisted we go to Rochester. Reminds me that even doctors aren’t always right.

Push on!

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@skipmarsliver, I want to reach out my hand in a virtual welcome to Mayo Connect. I am happy to greet you and to welcome you from my home in Kentucky. I am 10 years post liver and kidney transplant which I received at Mayo Rochester.
Do you know how brilliant your son is to point your compass northward to Mayo in MN? Unlike you, I did get top level care by my local doctors, and it was my own medical team that pointed me to Mayo. I am forever grateful that they knew twhere I needed to go!

Do you anticipate being placed on the transplant waiting list as a result of the 3 day screening and education at Duke? Will the tests that you had performed in Rochester be used as part of your qulifications for being listed?

What questions do you have about the evaluation process or about transplant?

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@skipmarsliver

I came to Rochester after my son urged me to. There a week, I learned more about cirrhosis of the liver, plus had more procedures than I had in two months in Western North Carolina. My gastroenterologist (East Tennessee) was content to have me lose water weight via diuretics, and monitoring with periodic blood panels. He told me no transplant center would even talk to me if I had consumed alcohol within the year (I quit entirely in early July). He didn’t give me a MELD score and downplayed knowing the cause of my liver disease (what will that change? he asked). That week at Mayo was a breath of fresh air for me, as well as the nod to take responsibility of my situation and to be proactive.

Although I live too far from any of the Mayo locations, but Duke Liver Transplant Center is 4 hours away by car. I’ve been invited to go through their 3-day screening and education for program mid-November.

So thankful my son insisted we go to Rochester. Reminds me that even doctors aren’t always right.

Push on!

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@skipmarsliver I also was on diuretics throughout my journey to transplant. I had edema but no other fluid build up in my body. Here in Ontario I was required to go to AA and had to prove my abstinence of alcohol. I was already not drinking but they had to have proof. I was listed within 6 months but my MELD was already at 27. I had to go through 3 days of testing prior to that. My diagnosis was based on an HE episode that put me in a coma. I would insist on getting my MELD score as that gives you an idea as to how far the cirrhosis has advanced. I am coming up to my one year anniversary post transplant. This group will be a wealth of information as to their experiences. I am so grateful to everyone who commiserated with me and offered personal solutions to many of the different effects of this disease. They're always here to listen.

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