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!

What is a MELD score and how is it calculated?

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@benlam11

What is a MELD score and how is it calculated?

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@benlam11 The MELD score is for liver — it stands for "MELD Score (Model For End-Stage Liver Disease) (12 and older)". There is also a PELD for pediatric livers.

Here is a calculator for it: https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

The MELD at which transplants occur varies a lot from one region to another – there are 11 regions I believe. I think Arizona is pretty good. I was in Boston which at that time generally did not transplant livers until the MELD was in the 30s but I was fortunate to get my transplant at MELD 28. I believe that my blood type helped with that. It's B. I think B, A and AB generally get transplanted sooner than type 0 because when a liver becomes available they look at who is next on the list with a matching blood type. If the liver is from a type O donor, that liver can go to anyone, whereas an O recipient can only get an O liver. At least that's my understanding of it.
JK

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@benlam11

Weight has been a lifelong problem, especially since I was a Desk Jockey for 30 years. I'm at 250 lbs despite exercise, so I am interested in doing whatever. Lately I've been told less than 2 gems of sodium per day, only low potassium foods and a low carb diet. It's getting absurd and I would like for one of these nutritionists to come up with a month long diet tailored for me, instead of here in Las Vegas just having them basically read their book to me.

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It's different for each person, but as a general rule, limit sugar and junk carbs. After that there are many factors involved, that have to be sorted out, blood work and hormone levels etc.

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@benlam11

What is a MELD score and how is it calculated?

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@benlam11, Here is a link to the Mayo Connect Transplant Pages that I want to share with you since you said that you are at the beginning of a possible transplant journey. I think that you will find a variety of transplant related information that is presented by the transplant staff. https://connect.mayoclinic.org/page/transplant/

Here is -The MELD Score: Definitions and Frequently Asked Questions
https://connect.mayoclinic.org/page/transplant/newsfeed/the-meld-score-definitions-and-frequently-asked-questions/

Liked by stella25

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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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I am a recent liver transplant patient ( March 10,2019 . You could experience a lot of things that you might think are not related to liver disease but are, like severe itching , rashes , weight loss just to name a few. My best advice to tell you is do what the doc tells you. Buy into the process it will be hard somedays, but stay the course, stay active as I worked for 4 hours on the day they wanted me to go to the hospital. Most of all stay positive that you will be blessed with a transplant . Even if you don’t get one at least your loved ones have good memories. I wish everyone could get the gift of life as I did. Good luck with the journey. Also if you can research life after transplant some as that ride is awesome and scary all in one.

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@mego2k

I am a recent liver transplant patient ( March 10,2019 . You could experience a lot of things that you might think are not related to liver disease but are, like severe itching , rashes , weight loss just to name a few. My best advice to tell you is do what the doc tells you. Buy into the process it will be hard somedays, but stay the course, stay active as I worked for 4 hours on the day they wanted me to go to the hospital. Most of all stay positive that you will be blessed with a transplant . Even if you don’t get one at least your loved ones have good memories. I wish everyone could get the gift of life as I did. Good luck with the journey. Also if you can research life after transplant some as that ride is awesome and scary all in one.

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mego2k, thank you for the info. I feel overall fine and stay active. I'm looking forwards to starting my evaluation journey at the MAYO in Phoenix next week, as my creatine level was 3.5 today. Unless told otherwise I will have Fistula Surgery in a couple of weeks and begin dialysis. I've been to numerous Las Vegas Doctors and Hospitals until finally it became obvious to me that I needed to be at a more comprehensive facility. I'm good at following Doctors orders with the Caveat that they Explain and not pontificate.

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@mego2k

I am a recent liver transplant patient ( March 10,2019 . You could experience a lot of things that you might think are not related to liver disease but are, like severe itching , rashes , weight loss just to name a few. My best advice to tell you is do what the doc tells you. Buy into the process it will be hard somedays, but stay the course, stay active as I worked for 4 hours on the day they wanted me to go to the hospital. Most of all stay positive that you will be blessed with a transplant . Even if you don’t get one at least your loved ones have good memories. I wish everyone could get the gift of life as I did. Good luck with the journey. Also if you can research life after transplant some as that ride is awesome and scary all in one.

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@mego2k,
Welcome to Connect. I am thrilled for you to have received your transplant and that you are doing so well!
Thank you for sharing your success and message of hope. During my own transplant journey, I looked for messages and signs of encouragement along the way, and a message such as you have just posted.

I invite you to scroll thru our many transplant discussions, and join in anywhere. While your transplant experience is still new in your mind, here is one that I want to share with you. – Liver transplant recipient: Care memories to share
https://connect.mayoclinic.org/discussion/liver-transplant-recipient/

@mego2k, What was the most surprising experience for you about getting your transplant?

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Thank everyone for all the insight. It will allow me to ask better questions of my team of doctors in Las Vegas and at the MAYO in Phoenix. I have to travel since there are no options to have a liver transplant anywhere in Nevada.

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@rosemarya

@mego2k,
Welcome to Connect. I am thrilled for you to have received your transplant and that you are doing so well!
Thank you for sharing your success and message of hope. During my own transplant journey, I looked for messages and signs of encouragement along the way, and a message such as you have just posted.

I invite you to scroll thru our many transplant discussions, and join in anywhere. While your transplant experience is still new in your mind, here is one that I want to share with you. – Liver transplant recipient: Care memories to share
https://connect.mayoclinic.org/discussion/liver-transplant-recipient/

@mego2k, What was the most surprising experience for you about getting your transplant?

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The day that the U of Kansas called and said they had a liver for me. Until then we hadn’t talked about a high risk liver and the liver was one of those. I asked him about it and he was very informative and answered all my questions. I knew that I was sick and I had always put my trust in my doctors for my care. So I took the chance and as it has turned out I am still alive and had I turned the liver down I would have died within a week. After transplant it was surprisingly odd that I made that decision on such short notice and all.

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@mego2k So happy you chose to take a high risk liver. You don’t say what was high risk about it but I recall that some of the things that could cause that classification were pretty minor. It sounds as if you’re doing great and have a happy, healthy life from this point forward. Isn’t it wonderful to be able to put that behind you?
JK

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@mego2k

The day that the U of Kansas called and said they had a liver for me. Until then we hadn’t talked about a high risk liver and the liver was one of those. I asked him about it and he was very informative and answered all my questions. I knew that I was sick and I had always put my trust in my doctors for my care. So I took the chance and as it has turned out I am still alive and had I turned the liver down I would have died within a week. After transplant it was surprisingly odd that I made that decision on such short notice and all.

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@mego2k, Thank you for sharing your experience! This is another example of the Miracle of Organ Donation – Life!

As I write this reply, I can't help but to remember the feeling of elation, relief, and joy that I experienced when I woke up after surgery. I still get chills when I remember it. I did not have to make a decision like you did, however I do remember my surgeon telling me that my surgery was not 100% certainty until she inspected the organs herself. She approved, and I got my transplant.

We are indeed fortunate to have good doctors to guide us!

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Hi,
I’m new to the discussion and just wanted to join the group. I am 7 weeks post liver transplant and was transplanted with a MELD of 23. Things for me so far are going well. I accepted a high risk liver with the donor being exposed to Hep B/C. Doctors informed me and my wife take whatever we could get and we did!

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@rodney9999

Hi,
I’m new to the discussion and just wanted to join the group. I am 7 weeks post liver transplant and was transplanted with a MELD of 23. Things for me so far are going well. I accepted a high risk liver with the donor being exposed to Hep B/C. Doctors informed me and my wife take whatever we could get and we did!

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Welcome @rodney9999 and congratulations on your new liver. Wow only 7 weeks. You'll notice that I moved your message to this existing discussion called "Liver transplant support group". I did this so you could meet a whole gang of people – some who are awaiting a liver transplant and others who, like you, have had a transplant.

I'm confident your story will be inspiring and of great interest to people who may have to consider a high-risk liver donor. How long were you on the waitlist? How are you feeling?

Liked by stella25

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@colleenyoung

Welcome @rodney9999 and congratulations on your new liver. Wow only 7 weeks. You'll notice that I moved your message to this existing discussion called "Liver transplant support group". I did this so you could meet a whole gang of people – some who are awaiting a liver transplant and others who, like you, have had a transplant.

I'm confident your story will be inspiring and of great interest to people who may have to consider a high-risk liver donor. How long were you on the waitlist? How are you feeling?

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Thank you for moving the posting. I was on the waitlist for 6 months. I realize it is early post transplant however I am feeling well.

I know everyone has a story and mine is a long one; however I just wanted to share a quick story. During a post op follow up appointment with my doctor, he asked myself and my wife to speak with another family regarding accepting high risk Hep B/C livers. This particular family was nervous, just as I was, about signing consent to accept such an organ if one became available. Without any doctors present, this family after talking with us for about 10 min and looking at me, signed consent.

For me, I was very sick however my MELD wasn’t high enough to warrant transplant. I’m realizing now that could have been the best decision of my life.

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@rodney9999

Thank you for moving the posting. I was on the waitlist for 6 months. I realize it is early post transplant however I am feeling well.

I know everyone has a story and mine is a long one; however I just wanted to share a quick story. During a post op follow up appointment with my doctor, he asked myself and my wife to speak with another family regarding accepting high risk Hep B/C livers. This particular family was nervous, just as I was, about signing consent to accept such an organ if one became available. Without any doctors present, this family after talking with us for about 10 min and looking at me, signed consent.

For me, I was very sick however my MELD wasn’t high enough to warrant transplant. I’m realizing now that could have been the best decision of my life.

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That is a powerful story, @rodney9999. It can really help to hear from others who have been there to allay anxieties and fears. It must've been very rewarding to have helped the other family feel less nervous about a life-changing decision. With Connect, you can continue to help others through your experiences. Glad you're here.

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