By Alyce Collins
AFTER becoming severely jaundice and fearing she would die, this woman was diagnosed with a rare liver disease which was causing her body to fail until an old school friend miraculously became her liver donor to save her life, and she is now preparing to welcome her first child.
Wellness and essential oil educator, Amanda Washek (28) from Pennsylvania, USA, developed a persistent tiredness and nausea in 2014, despite her efforts to feel better. As her symptoms progressed, Amanda also became incredibly dizzy and couldn’t keep food down.
After months of sickness, Amanda’s husband Justin (29) rushed her to the hospital but her health had declined so much that her skin had become yellow and nurses were taken aback by her yellow complexion.
Amanda instantly received a blood transfusion, but her health didn’t improve in the following days, so she had to be transferred to a better equipped hospital. The idea of being transferred was a warning sign for Amanda who realised that something had to be seriously wrong.
Doctors were able to monitor Amanda’s condition for two weeks and she was diagnosed with primary sclerosing cholangitis (PSC) in May, a condition she’s believed to have had for most of her life but had progressed rapidly in the months prior to being admitted.
The only effective treatment for the condition is a liver transplant, but doctors assured Amanda that she wouldn’t need one for another five to 10 years. Unfortunately, after being monitored, her condition continued to decline, and she was listed for a transplant in September 2014.
It became apparent that Amanda wouldn’t survive if she didn’t get a liver transplant soon, so she was instead listed for a living donor and the first living donor to speed up the process. Miraculously, Amanda’s donor, Maddie (28) is an old school friend who she regularly enjoyed meeting up with. Since becoming Amanda’s donor, the pair have grown even closer.
“At 23 years old, I had the world at my feet. I was newly married, and I was healthy, and then the next minute, I wasn’t, and my body started to fail me. I woke up feeling tired and weak which persisted on and off for months,” said Amanda.
“After a few months of feeling tired and sick, the dizziness came on suddenly one day and as the day progressed my symptoms worsened until Justin took me to the hospital.
“I was too weak to fight him and as I crumbled to the ground on the way to the hospital, I realised he was right to take me. I was too dizzy to stand, let alone walk. Justin had to carry me to the car, drive to the entrance, and find a wheelchair to get me into the hospital.
“As he wheeled me in, my eyes were closed, but I peeked at the nurse when she shot out of her seat and said, ‘honey, you’re yellow!’ and asked how long I’d been this way.
“By this time, my symptoms included hair loss, fatigue, dizziness, insomnia, jaundice and I looked gaunt.
“I was immediately given a blood transfusion to be pumped with new blood. All I was conscious of was Justin in the chair near me, with a worried expression.
“Eventually they decided to send me to a bigger hospital, better equipped to help me. The decision triggered an unnerving thought that there was something seriously wrong.
“In the middle of the night, I was transported to another hospital by ambulance where we spent the next two weeks. There were a lot of needles, tests and questions. I had a lot of sleepless nights filled with blood pressure checks and pokes.
“Then I finally received the words that would change me and my worldview forever. I was told that I had a rare liver disease called primary sclerosing cholangitis. I was shocked and filled with sadness and fear.
“We learned that PSC is a chronic bile duct disease that damages the bile ducts inside and outside the liver. The ducts become inflamed, leading to scarring and blockages, which prevents bile from flowing out of the liver. Some cases are fast moving, like mine, while others transpire over many years. The only effective treatment is a liver transplant.
“The information came too quickly. I was just trying to push through my immediate thought that I was going to die. I didn’t want a liver transplant, but once I realised that it was my only hope for survival then I knew I had to. I was told that it would likely be five to 10 years down the road anyway.”
Doctors hoped Amanda’s condition could be stabilised but after five months of no improvement she had to be put on the transplant list as her condition deteriorated. Thankfully, after months of waiting, a friend of Amanda’s was a match.
Since her transplant, Amanda’s health has continued to improve and in February 2019 she received her greatest surprise yet when she discovered she is expecting her first child, due in November 2019.
“I spent a few months waiting for the phone to ring, willing my doctor to call with the bittersweet news that someone had died, and their liver was a match for me. I was on constant alert,” said Amanda.
“After a few months at a standstill, my hepatologist suggested a living donor. It is remarkable, but because the liver regenerates, living donation is possible. I resisted this idea for a while, but I was waiting for a deceased donor but wasn’t moving up the list. I eventually gave in when I realised, I was getting sicker but wasn’t any closer to receiving my transplant.
“My donor, Maddie, was working with my mum and she heard I needed a liver and she came forward to get tested to see if she’d be a match.
“Maddie is an old friend of mine. I grew up in a small town where everyone knows everyone. After graduating, when we were both in town, we’d meet for coffee, a shared love of ours.
“At long last, we received official word that I would receive 65 per cent of Maddie’s liver on August 11, 2015. This gave us two months to prepare. It doesn’t sound like a lot of time, but when you are simultaneously excited, exhausted, sick, scared, and ready, it’s long enough.
“The recovery process hasn’t been without bumps, but I feel I have conquered the worst of it. I have done the hard parts: the waiting, the uncertainty, the surgery, and the first big virus after transplant.
“While I will always be monitored, and there is a small possibility of my PSC returning, there is also a huge possibility that it will not. I am not the person I used to be, but I have gained more than I ever imagined. I have a greater appreciation for life. I love waking up each morning and remembering that my liver works.
“I can take long walks with my husband, I can climb mountains, I have dreams that I can work towards and see without an inner fear that I won’t reach them. I have a future, and it’s all due to my donor and my surgeons.
“Then in February this year, I discovered I was pregnant and about a month along. It was amazing news!
“As a transplant recipient, I am classed as high risk and must be closely monitored, but the baby is doing wonderfully and my liver has stayed content, with some slight medication tweaking.
“It’s so important that people understand organ donation and its importance. The waiting list is so long and there are simply not enough organs to go around. Much of this is due to myths and fear surrounding donation and I hope sharing my story will help.”
To see more, www.instagram.com/amandawashek