The Twists and Turns of a Life with Liver Disease
The Twists and Turns of a Life with Liver Disease
Anyone who knows Fay Simmonds will tell you that she is the supportive backbone of her family. Together with her husband Don, Fay has lived an incredibly busy and rewarding lifestyle, including raising four kids.
In May of 2011, with a son who was recently married, and daughter with a wedding on the way, Fay didn’t think much of her growing fatigue. Soon after, when her leg became swollen, Fay thought that it was time she paid a visit to her family doctor.
After undergoing a simple blood test, Fay’s doctor advised her to see a liver specialist immediately, telling her she had a chronic liver disease. Due to the unfortunate stigma of liver disease, Fay was understandably shocked. She couldn’t wrap her head around how someone who had never consumed alcohol or used drugs in her life could develop a liver disease.
To make matters more confusing for Fay, she was diagnosed with not one, but two rare liver diseases; primary biliary cholangitis (PBC) and autoimmune hepatitis (AIH).
When Fay was referred to a specialist for treatment, she quickly learned the severity of her prognosis.
“When I was first diagnosed, my doctors explained that 70% of my liver was already damaged,” says Fay. “They went on to say that my liver had probably been under attack for over 20 years.”
A daily regimen of medication, diet and careful monitoring of deficiencies stabilized Fay for the next four years. She was finally cleared to travel to Florida with her 18-year-old Equestrian daughter. One frightening afternoon, however, Fay’s varices (small blood vesicles that become enlarged in liver disease patients) ruptured causing massive internal bleeding. She spent four days in ICU and was then airlifted to a hospital in Canada, clinging to life.
Fay’s understanding was that her liver disease would be a deteriorating health journey that could last up to ten years. Instead, Fay and her family were shocked when in March of 2015, the doctors told her that she was now in total liver failure. She would not live without a liver transplant.
“…my liver had probably been under attack for over 20 years”—Fay Simmonds
Fay’s circulatory, respiratory, digestive and cognitive systems were all broken down. Her weight decreased to a mere 94 pounds until severe ascites (another symptom of liver cirrhosis where water builds up in the abdomen) caused her to gain 20 pounds in a single day.
Hepatic Encephalopathy (HE) Type C, a complication of cirrhosis, was now fully evident.
“The unfiltered toxins going to my brain was one of the terrible symptoms,” recounts Fay. “Some days, I could hardly recognize my husband or kids. I would not know where I was and could not perform even simple tasks. My husband would tie a string to our wrists at night time so that I could not wander off and fall down the stairs.”
Fay was soon put on the waiting list for a living donor transplant.
“42 people came forward to offer themselves to help save my life”, says Fay.
Craig, Don and Fay’s 29-year-old son, was the first selected to undergo all of the testing procedures. It was concluded that he was a positive match to be her living donor. Craig now had a chance to donate a part of his liver and save his mother’s life.
His next steps, however, were not without extremely hard and dedicated work. Craig, although very healthy, was tasked with losing 40 pounds in six weeks to get his liver in pristine condition for his mom.
Craig’s rapid weight loss, which was guided by doctors, was effective, and in August of 2015 (on her 61st birthday!), Fay successfully received 65% of Craig’s liver in a side by side surgery. Her life and health, while still not without its complications, has been miraculously restored.
“This was one of the most fulfilling decisions of my life,” says Craig. “When I think about making this decision, it’s easy when one considers the life of the person or people you could save.”
While this traumatic experience may seem heartbreaking to some, Fay’s hopefulness and gratitude remain as clear as ever.
“My family and I are nothing but impressed by the valuable information we always received from the medical community and the Canadian Liver Foundation,” says Fay. “What more can I say except ‘thank you’ to the CLF for providing support for research and education so the doctors can solve liver issues and save lives.”
When asked for some parting words that may help those who are personally affected by liver disease, or for those who are caring for someone with liver disease, Fay had this to add:
“Please consider signing up to be an organ donor, one person can save up to eight lives,” says Fay. “Also, if you have liver disease, find others who have a similar experience and just talk to them. Sharing your story requires bravery, but it is so healthy and healing for all involved— it needs to be done!”
You can take Fay’s advice today by joining our peer support network; a national network of people living with liver disease sharing and comforting others with similar experiences. Visit our website for more information on how to join.
6 thoughts on “The Twists and Turns of a Life with Liver Disease”
I loved your life story. Ten years ago this month my husband was a live liver donor for his cousin who had PSC. Ironic that I was diagnosed with PBC in March of this year.
Oh does her story bring back such scary days for myself….I was diagnosed at age 40. I was transplanted in July 1991. In those days there was not a chance of a donor giving part of their matched liver. I was on the list for a transplant for about 5 months. I was the 25th person transplanted at the U of A (Edmonton, Alberta) and # 9 with PBC. I now have celebrated my 27 year post transplant. Yes PBC has infected the new liver and Urso has kept it at bay. I too want people to think about signing a donor card and make their wishes known to their family.
Une histoire très inspirante! J’ai été diagnostique en 2011 d’une hépatite auto-immune. Bien que quelques changements à ma santé les dernières années, il faut toujours garder espoir :)! Une journée à la fois! Il est très important de signer la carte de dons d’organe, la vie ne tient qu’à un fil!
Bonjour Annie, pour plus informations, veuillez contacter notre service d’assistance national au 1 800 563-5483, du lundi au vendredi de 9 h à 17 h HNE ou à tout moment à l’adresse suivante: email@example.com.
Thank you for sharing your story. A patient myself, it is always encouraging to know that there is hope.
Diagnosed this april with PBC but I’ve had elevated LFT and extreme fatigue since 2015 after my thyroiditis.
We are sorry to hear about your struggles with PBC. Feel free to connect with us for information on how to cope. You can contact our National support services toll-free number at 1 (800) 563-5483 Monday to Friday from 9 AM to 5 PM EST or anytime at firstname.lastname@example.org.