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!

@tayloryvette

Thanks and yes. I struggle with even wanting to eat sometimes. I only weigh 125. I lost another 3 lbs. this week. Thank you for the encouragement. so needed and appreciated. Congrats on your recovery! Gives me hope!

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@tayloryvette, I am concerned about how your body being affected by your liver disease. Have you made any progress with getting transferred to Mayo as you mentioned?

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@rosemarya

@tayloryvette, I am concerned about how your body being affected by your liver disease. Have you made any progress with getting transferred to Mayo as you mentioned?

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

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@jim1208

Yes maam I am staying overnight. Have to, Mayo is 140 miles from home. I get far to run down to drive that much. Yes I did the tour of The Gift of Life house.

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@jim1208 Hi, Jim. I like to check up on members in the transplant group. I would like to say that I hope that you are moving forward each day. Have you been to Mayo recently? How often do you have scheduled appointments?

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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
My transplant center gave me some guidelines, but even with those I have called my Mayo Pharmacist for instructions about what to do Why dont you call the transplant pharmacy,if you use one, ot your transplant center/nurse.
This happens to others, too. It has happened to me.
Let me know if this works.

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@rosemarya

@livertrex
My transplant center gave me some guidelines, but even with those I have called my Mayo Pharmacist for instructions about what to do Why dont you call the transplant pharmacy,if you use one, ot your transplant center/nurse.
This happens to others, too. It has happened to me.
Let me know if this works.

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Thanks, I called them waiting for a call back. But in the meantime I
looked up on the internet. And I determined that it's okay as long as I
don't take a double dose at one time. That applies to all the drugs I'm on.
Thanks very much

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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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@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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