Sarah - waiting for a liver

Sarah, 34, a married mum, has been waiting for a liver transplant for 18 months due to biliary atresia.

She said: “Sometimes I feel fairly normal and other days I have nausea, lack of appetite, headaches, but the one issue which never really leaves me is the extreme tiredness.

“I also get encephalopathy. I best describe it as a brain fog. I become forgetful. Once I almost forgot to collect my son from school and it was upsetting that I could forget something so important.

“I get asked ‘are you near the top of the list’ or ‘have you heard anything about when you might get your transplant?’. People imagine there is a waiting list like there would be when you collect a ticket in a queue at the deli counter. It's not like that at all.

“When a liver is donated, it is assessed for blood group, size and more, and only then is the list of patients who suit this particular liver generated. There are a whole host of factors which are considered including which patient is the most poorly.

“In the beginning, I felt permanently on edge and I'd get nervous every time I received a call from an unknown number. It is incredibly frustrating to never know when the phone call will come.

“It’s hard-hitting when someone you know doesn't get their transplant. When I heard the news about a friend’s husband dying, the potential for me to be in the same position became more real.

“A transplant will be amazing because without it, I will have a shorter life. I know my initial thought will be sadness for the family who have lost a loved one and who have made an important and thoughtful decision to donate organs to enable me to have a longer life.”


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