“Love You to Pieces!”
Being diagnosed with Primary Sclerosing Cholangitis (PSC) was a terrifying experience for Lorraine. An autoimmune disease that scars the inside of the livers bile ducts, Lorraine’s PSC initially progressed very slowly. But six years after her initial diagnosis, her liver disease kicked into high-gear and began severely damaging her liver.
“I was jaundiced, sleeping away my days and feeling very swollen from the water retention,” says Lorraine. “People would often compliment me on my ‘tan’ or congratulate me on my ‘pregnancy’—I found myself tiptoeing around comments, trying not to make them feel bad when I’d tell them ‘oh I’m not pregnant, I just need a new liver!’”
Over time, Lorraine developed hepatic encephalopathy (HE), a complication of liver disease that caused her memory to deteriorate due to the unfiltered toxins that made their way to her brain.
“My husband Ken, my family and my friends would often tell me something that I would almost instantly forget it,” says Lorraine. “There are a lot of details about my journey through liver disease I still find myself asking Ken and my twin sister Connie about because I just cannot remember them.”
Lorraine’s pain levels became unbearable at times. She recalls that she had to make up her own form of affection with her young son, Zac, called “kitty kisses” (where you wink at each other from across the room as a form of hugs and kisses) due to her pain.
“I knew during those moments how much my disease was affecting my family and no one could tell me otherwise,” said Lorraine. “One of the worst parts of being sick is watching your family’s faces and knowing they want so desperately to help you, but they are powerless in that moment”.
Lorraine’s doctors soon told her that she was in desperate need of a liver transplant, and put her on the transplant list without delay. After testing and evaluating a number of relatives and close friends, Lorraine’s twin sister Connie was successfully named as her ideal living donor.
However, Lorraine was reluctant to let Connie go through with the surgery.
“In all honesty, I didn’t want Connie to be my donor at first— I was too scared for her, and I didn’t want to lose her,” she said. “But of course, I am so incredibly thankful for her, she’s always been one of my strongest supporters.”
During her time in the hospital, Lorraine thrived off the comfort she found in life’s small moments—her favourite cookies, magazines, uplifting visits and funny text messages from family and friends.
Lorraine successfully received a portion of Connie’s liver during a procedure lasting over 13 hours. Despite the pleas of their family to rest and be calm, Connie made certain that a nurse would take her to see Lorraine.
“She knew that if I didn’t know she was doing well, I wouldn’t rest and get better,” said Lorraine. “Our family would tease us during the time saying it was funny to watch us try and take care of each other while in the hospital—I just think they knew better than to try and stop us!”
Lorraine says she will be forever grateful to Connie and is glad they were able to undergo this journey together. With her ability to think clearly now restored, she is now left with memories of her dad’s hopeful words reminding me that ‘losing is not an option’, and Connie saying ‘love you to pieces!’—a fitting remark to describe an inseparable bond of two loving twin sisters.