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Liver transplant - Let's support each other

Transplants | Last Active: 17 hours ago | Replies (1623)

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@rosemarya

@klm3, Welcome to the liver transplant group! I am happy to have you join in the conversation. I will not deny the fact that we who are waiting for an organ transplant have had to learn that it can be a long journey that is filled with anxiety, frustration and decreasing health...but we, all of us, are here to share our experiences and to walk with you and offer our support along way.

In my opinion and experience, the secret to getting through the long wait is to focus on one day at a time. Find something to be thankful for each day. And work with your medical team because they are the experts who know what is best for you. Be aware that well meaning friends and relatives who think they know more than the doctors.

When I lived in Kentucky, I was given 45 minutes to get to the hospital because that is how far we lived from the transplanr center. Later, when I was at Mayo Rochester, I was a few blocks away and was told to come in right away. I think that your transplant team will work with you to make a plan.

As for alcohol, you are correct that it is a factor in being eligible for a transplant. You will be providing your medical records, and be advised accordingly. Alcohol consumption is one of the screenong questions. Avoidance is essential, and in some instances there is a need for proof.

Kim - Would you share a bit about yourself if you are comfortable? Are you already a patient at a liver transplant center? Have you been scheduled for a transplant ecaluation yet? or Are you already on the active transplant list?

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Replies to "@klm3, Welcome to the liver transplant group! I am happy to have you join in the..."

@rosemarya Hello, and thank you for the information. I live in Chandler, AZ which is right by Phoenix. But everything is spread out here so... the nearest transplant centers without traffic are about 40 minutes away. I am 41 years old and not sure if there is any other info you'd like to know - feel free to ask. I have a Hepatologist and they said that a transplant is the most likely course for me due to my cirrhosis. I am not a patient of a transplant center, we are in the evaluation stage I believe and doubt I'm on the list. So far they confirmed the hospital assessment that I have cirrhosis and have done a scan. I go in tomorrow for an ultrasound and bloodwork. My hepatologist scheduled an appointment for me in May. I guess in May I find out if the next step is going through the tests needed by the transplant center or Viola... they apologize for the mistake and everything is A-Okay, lol.

A number of people have commented on getting sicker over time as they waited on the list. Anyone willing to share what they got sicker with.