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.

@silvergirl36

Can you tell us your story after receiving your transplant?
What were some of the things you experienced and how did you deal with them?

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@silvergirl36, I see that you have recently joined Mayo Connect, and I want to Welcome you. I am a liver and kidney transplant recipient and I love your online name! Do you have silver hair?
I notice that you have reached out to a member about sharing a transplant story. Here is a link to a discussion group where many members have already shared their stories.
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

Silvergirl, What brings you to Connect?

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@rosemarya

@silvergirl36, I see that you have recently joined Mayo Connect, and I want to Welcome you. I am a liver and kidney transplant recipient and I love your online name! Do you have silver hair?
I notice that you have reached out to a member about sharing a transplant story. Here is a link to a discussion group where many members have already shared their stories.
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

Silvergirl, What brings you to Connect?

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Thank you! My last name is Silver. 😉

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WONDERING WHETHER ANYBODY ELSE HAS THESE ISSUES, FOR HOW LONG, ANY SYMPTOMS, AND HOW WAS IT DIAGNOSED-- AND WHAT IS YOUR PROGNOSIS-HAS THERE BEEN TRANSPLANT DISCUSSION? MELD SCORE IS 14-DIAGNOSED WITH BLOOD TESTS, ULTRASOUND, AND BIOPSY 5 MONTHS AGO-TO ANYBODY AND EVERYBODY... STAY HEALTHY

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@maw90455

WONDERING WHETHER ANYBODY ELSE HAS THESE ISSUES, FOR HOW LONG, ANY SYMPTOMS, AND HOW WAS IT DIAGNOSED-- AND WHAT IS YOUR PROGNOSIS-HAS THERE BEEN TRANSPLANT DISCUSSION? MELD SCORE IS 14-DIAGNOSED WITH BLOOD TESTS, ULTRASOUND, AND BIOPSY 5 MONTHS AGO-TO ANYBODY AND EVERYBODY... STAY HEALTHY

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Welcome @maw90455, several members have or have had liver conditions such as cirrhosis, NASH and NAFLD and awating transplant. To help you connect easily with other members living with liver conditions and awaiting transplant and those who have received a liver transplant, I moved your post to this discussion:
- Liver transplant - Let's support each other https://connect.mayoclinic.org/discussion/liver-support-group/

Maw, can you share a bit more about yourself so @rosemarya can help connect you with members and discussion topics relevant to you? Are you on a transplant list? How are you doing?

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@maw90455

WONDERING WHETHER ANYBODY ELSE HAS THESE ISSUES, FOR HOW LONG, ANY SYMPTOMS, AND HOW WAS IT DIAGNOSED-- AND WHAT IS YOUR PROGNOSIS-HAS THERE BEEN TRANSPLANT DISCUSSION? MELD SCORE IS 14-DIAGNOSED WITH BLOOD TESTS, ULTRASOUND, AND BIOPSY 5 MONTHS AGO-TO ANYBODY AND EVERYBODY... STAY HEALTHY

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Hi, @maw90455, and Welcome. By way of introduction I am a liver/kidney recipient, and I would like to thank you for your "Stay Healthy" message to everyone! I hope that thru your conversations and participation that you will learn along with other who are so generous to share their experiences.

Many patients with liver disease and transplants have a common bond thru our common connections with cirrhosis and multiple tests and scans.

I am eager to help you connect with others. Are you being considered for a transplant? Have you been diagnosed with NASH of NAFLD?

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@colleenyoung

Welcome @maw90455, several members have or have had liver conditions such as cirrhosis, NASH and NAFLD and awating transplant. To help you connect easily with other members living with liver conditions and awaiting transplant and those who have received a liver transplant, I moved your post to this discussion:
- Liver transplant - Let's support each other https://connect.mayoclinic.org/discussion/liver-support-group/

Maw, can you share a bit more about yourself so @rosemarya can help connect you with members and discussion topics relevant to you? Are you on a transplant list? How are you doing?

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I am not yet on a transplant list-I am going for scans and blood tests every 60 days.-I am always exhausted, and never concerned about eating-not sure what else you want me to say about my situation-not sure if related, but my BP seems to be like a roller coaster every other day-and on daily BP medications.

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The start of my concern only came up during pre-op blood tests for another situation- I have never been a drinker or drug user.

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@rosemarya

@silvergirl36, I see that you have recently joined Mayo Connect, and I want to Welcome you. I am a liver and kidney transplant recipient and I love your online name! Do you have silver hair?
I notice that you have reached out to a member about sharing a transplant story. Here is a link to a discussion group where many members have already shared their stories.
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

Silvergirl, What brings you to Connect?

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Potential liver transplant

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@rosemarya

Hi, @maw90455, and Welcome. By way of introduction I am a liver/kidney recipient, and I would like to thank you for your "Stay Healthy" message to everyone! I hope that thru your conversations and participation that you will learn along with other who are so generous to share their experiences.

Many patients with liver disease and transplants have a common bond thru our common connections with cirrhosis and multiple tests and scans.

I am eager to help you connect with others. Are you being considered for a transplant? Have you been diagnosed with NASH of NAFLD?

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I have been diagnosed w Cirrhosis, NASH and NAFLD,

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@maw90455

Potential liver transplant

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@maw90455,
Unfortunately many people assume that alcohol is the only cause for liver disease. I also was diagnosed with a liver disease not related to alcohol. Mine was due to my family history of autoimmune conditions. I had no symptoms, except that my Primary Care Physician (PCP) noticed unusual blood lab results and referral to specialist and a range of tests and scans as you are currently experiencing.
I was frightened and confused during the testing while waiting for a diagnosis. It is not easy to wait and wonder.

I want to share some information about NAFLD, NASH, and Cirrhosis from the Mayo Clinic Health Information section for Diseases and Symptoms. You will read that Nonalcoholic fatty liver disease (NAFLD) includes a range of liver conditions that are not related to alcohol consumption. -Nonalcoholic steatohepatitis (NASH) is an aggressive form of fatty liver disease with the risk of developing into scarring (cirrhosis). It is one of the most common forms of liver in the US. Here is a link to the information.
-Nonalcoholic fatty liver disease
https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/
I hope this will give you a starting point for gathering information about why the doctors are monitoring your health so carefully.

Here is a support group. If you make post there it will be reanimated and members will see it and able to join you in conversation.
Diagnosed with NASH. Listed for liver transplant
https://connect.mayoclinic.org/discussion/hello-all-my-name-is-howard-and-i-have-been-diagnosed-with/

I look forward to joining you there.

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