A New Lease on Life
My liver story begins in July 2000. My boyfriend, Jeremy, and I decided to take a summer holiday to Edmonton and Calgary to visit family, and during our trip I started to get really sick – loss of appetite, losing weight, feeling really achy in my bones and joints, and feeling so fatigued all the time.
The day after we came home from our trip, my parents had friends over for coffee, and one of them was a doctor. He took one look at me and told me to go to the hospital to get some lab work done, as he noticed that my eyes were quite jaundiced, and he suspected it was Hepatitis A from something we ate while we were away.
Jeremy’s lab work came back fine, but mine came back with elevated liver enzymes; the concern was that I might have a liver problem, so a referral was made to a liver specialist, and I was sent in for a biopsy. I was diagnosed with chronic active Autoimmune Hepatitis (AIH), a disease characterized by chronic inflammation of the liver, the exact cause of which is not yet known.
At the time of diagnosis, I was told that there is no cure for AIH and that I would need a liver transplant in about 10 years. This was shocking and scary to hear, and I worried a little about what to expect in the months and years to come.
I was put on prednisone and azathioprine (immunosuppressive medications) but continued experiencing my original symptoms – loss of appetite, weight loss, achiness, and fatigue. I had to take a medical leave from work while my body adjusted to the side effects of prednisone—sleeplessness and restlessness being the top two! Eventually, things started to feel like they were getting normal, and I went back to work in October.
In November, Jeremy proposed. We planned our wedding for April 2001, and, on top of everything else, we moved to Calgary that same week to start our careers. We were stressed, but things were looking up.
I moved with a referral to a liver specialist, Dr. Samuel Lee. I continued taking my medication and was always adjusting the doses. In October 2004, I had an endoscopic retrograde cholangiopancreatography (ERCP) to take another look at my liver, and Dr. Lee said he saw signs of my liver disease changing. I had another liver biopsy, but the results were inconclusive.
In June 2005, Dr. Lee had me go see a liver specialist in Toronto—Dr. Jenny Heathcote—and she confirmed that not only did I have AIH but Primary Sclerosing Cholangitis (PSC), as well. That’s another liver disease in which the bile ducts in your liver are slowly destroyed, resulting in bile build-up and scarring. Over the next several years, I continued to be very fatigued, experienced a lot of weight gains and losses, and got many of colds, flus, and strep throat as well as many adjustments to my medications.
Thankfully, it was during this time that I discovered the Canadian Liver Foundation, a great community and source of information! My husband and I began attending seminars and have continued to do that over the years, so happy to have found this resource. Finding a sense of community and learning about CLF’s work around patient support, research, advocacy, and education was a reassurance that I wasn’t alone and that this organization was working hard to find answers and a cure for liver disease (which they of course continue to do today).
The next decade brought with it more challenges. In September 2011, I started getting ascites and was put on diuretics. In December 2012, I got an endoscopy and needed banding on varices. This continued for the next few years. I was laid off in March 2016 from the oil and gas industry, and that year a blood clot was found in the portal artery into my liver, and I started on blood thinners. In July 2017, I was referred to the Liver Transplant Clinic and started to see Dr. Kelly Burak. In December 2017, I sustained three fractures in my back that weren’t diagnosed until March 2017. That was an extremely painful three months! I did eventually get a proper back brace and walker, and this is when concern for my bone density and osteoporosis really started. I also lost 3 inches off my height!
Finally, in January 2018, I was sent to Edmonton to meet with the Edmonton Transplant Clinic, and I was put on the transplant list on January 25, 2018. I had a lot of problems with ascites and infections, but thankfully my wait was short; on March 2, 2018, I had my transplant! That summer was the also first Stroll for Liver that I participated in with my husband, sister, and her family. What a great annual event and fundraiser!
Since my transplant, much has improved—no more jaundice, so much more energy, only half the medications, and living my best life! While at the time of my initial diagnosis I was told I would need a new liver in a decade, I had managed to make it 18 years before my transplant. I think a lot of that is because I followed my doctor’s instructions, educated myself, and have always taken care of my health to the best of my ability. I’m also a very positive person, and I do think that the right attitude is important. I had lots of love and support from my husband, family, and friends which also helped me through the tougher times. I am very blessed.
While it hasn’t always been easy since my transplant (there have been a few bumps in the road), I am doing well. Organ donors are so important, and it’s amazing how they give people like me a new lease on life. This is why the CLF is so important—from diagnosis to treatment to transplant to post-transplant, they were there every step of the way and are essential in making sure there is awareness about organ donation, liver disease, patient support, and research.
My Stroll for Liver team, Calgary Liver Lovers, will be participating in this year’s virtual event on August 30, and we’re working towards our team goal of $2,500. We’re glad to be able to continue participating and raising awareness and critical funds so we can get closer to a cure. Donors and supporters of the Stroll directly help people like me, and every dollar counts. I am confident that together we will find a cure for liver disease!