June 1, 2020
A Transplant, a Diagnosis
and a New Normal
Dear Wilson’s Friends,
Everyone has a different story! Every diagnosis is unique! Our story is both different and unique.
Nine years ago, our daughter, Lexie, at 21 years old was in the prime of her life. A college student, who was so excited about her upcoming semester abroad in Australia, in perfect health. In May of 2011, just three months prior to her journey Down Under, she presented symptoms of mononucleosis. She was weak and barely eating, yet gaining weight. As her “mono” healed, the day eventually came when she was scheduled to leave. In my heart, I knew something wasn’t right, but the doctor gave her the green light to travel. At the airport, we said our tearful goodbyes, which were fueled with excitement, nervousness and concern.
She called to say she arrived safely, but felt worried because her ankles were swollen. I naturally thought it was due to the long flight and advised her to walk and elevate her legs.
Her condition seemed to rapidly decline as she began to feel horrible. I knew something was terribly wrong. As a parent on the other side of the world, I was overcome with a feeling of helplessness and worry. She finally became hospitalized, and I felt re-assured that she was getting appropriate medical treatment.
That morning, at 2AM our time, we received a call that she had fallen into acute liver failure and had HOURS to LIVE. They believed she had Wilson’s disease. Having never heard of Wilson’s, I immediately researched as much as possible. I was in total shock and literally went completely numb. We were told that it was possible that the mononucleosis might have caused this rare gene mutation to go haywire and cause her dire situation.
My husband, David, and I booked the first flight to Sydney, Australia and the next several hours became a complete blur. The flight was approximately 18-plus hours of having no idea what we would find upon arrival. Somewhere over the Pacific, the flight attendant approached and said she had a telegram for us. She read the following words… “Your daughter received a successful LIVER TRANSPLANT!” David and I were in complete shock and looked at one another and said, “WHAT?” The word transplant had NEVER EVEN been discussed.
Once we arrived, we learned so much more about Wilson’s disease, liver transplants and how to navigate our new normal. We now became concerned about our other daughter, Taylor who was 19 and a college freshman. Do we have her get tested? Could she possibly have Wilson’s disease too?
When we returned home, we immediately had Taylor tested. We were told the odds of the second born having the disease was 1 in 646,000. We all had to take a deep breath as Taylor did test positive. Thankfully, Taylor was fortunate to be diagnosed prior to presenting any physical or neurological symptoms. Today, Taylor is doing well and is healthy as her disease is controlled with daily medication and diet. Lexie is now cured of Wilson’s, as her life was miraculously saved by an anonymous organ donor’s selfless and heroic decision.
Now, some nine years later, my advice to a caregiver of someone who is newly diagnosed would be to ask as many questions as you can. Be knowledgeable, supportive and optimistic. Trust your instincts! Over the years, I have tried to instill in my daughters a sense of ownership of their individual medical issues. I recall telling them, “to own it, show your scars, share your stories and always stay strong and positive.”
One struggle that I personally still face today is the guilt that I carry for being a carrier. I’m not sure I will ever get over it, but seeing my girls accept life as it was dealt to them fills me with admiration and pride.
As I learned, everyone has a different story and every diagnosis is unique!