Paying it forward
In April 2016, not long after I turned 40, I began experiencing horrible pain along my sternum. My doctor sent me for a series of tests, and, after undergoing blood work and scan after scan, I was diagnosed with primary sclerosing cholangitis—a rare autoimmune disease that causes scarring and inflammation in the common bile duct. PSC is often accompanied by ulcerative colitis, which was the case with me. My gastroenterologist informed me that this disease also carried with it a high risk of common bile duct cancer and that I might require a liver transplant at some point. While I was surprised by a diagnosis I’d never heard of before, I didn’t experience much discomfort. Routine MRIs followed, but I spent the next couple of years problem-free, enjoying life with my husband and three children.
It was February 11, 2019, following a routine MRI, that the first issue popped up. My gastroenterologist gave me a call to say that I had a precancerous polypoid and would need a liver transplant. I was referred to a surgeon at Vancouver General Hospital. By this time, I was suffering from infections and was hospitalized for four days in March. Although I had a fever and shakes, I was not as discouraged as you might think. I had hope and faith. There was a long process to get on the waiting list for a liver, and I was told that I couldn’t even begin that process until August. My faith led me to contact my surgeon about the delay, and, since he was the head of the transplant clinic, he was able to speed things along. What would have taken months took weeks.
But then came the waiting. The waiting can be the hardest. It’s so important to hold on, keep hope, during the waiting.
I cancelled a trip to Europe that summer so that I could be nearby in case a liver became available for my transplant. In August, I was sent to see one of the transplant clinic’s surgeons who informed me that there was a mass on my liver, that my prognosis was not good, and that I was now ineligible for a transplant. I refused to let anyone see my tears, and I refused to give up. I got on the phone to my superhero surgeon, the professional I knew to be a real fighter for his patients, and he assured me that he would do everything he could. I heard nothing in September. I had more infections in October.
I talked to my surgeon about the possibility of having a live donor, knowing my brother was a match, but I was told that there simply wasn’t enough time for that.
It was Saturday, November 9, 2019, when I received a call. I was just sitting down to breakfast with my six-year-old, getting ready to enjoy our cereal while watching cartoons, when the phone rang: there was a possible match for me. At the hospital, I was warned that they would not know for sure that they would be able to perform the transplant until the surgery was underway. My surgeon told me that if I woke up in post-op, I’d know the transplant had not been a “go,” but if I woke up in ICU, I’d know that they’d performed the transplant and that I had a new liver inside me. I woke up in ICU.
I’d gone into surgery at 7:30, and by 12:30 my surgeon called my husband to say that surgery had gone well. They’d removed the mass and searched for about two hours for any signs of cancer outside the liver. Finding none, the transplant had been successfully performed. As I woke, gratitude for my donor, my surgeon, my family, my friends, and all their support and prayers, enveloped me. I benefited greatly from each one, and I really felt it. I benefited from the hope and faith of those around me, from the expertise and care of my medical team, and from the love of my friends and family. And from the kindness. Never underestimate what kindness can do when you share it, when you’re gifted with it.
I was out of the hospital just six days after my surgery. I was required to take oral chemo for six months as a preventative measure, and I ended up back in hospital briefly with a pulmonary embolism that I experienced as a result of the chemo. But now, I have just finished the treatment, and although I’m still feeling the effects of treatment, I am doing much better. I am able to do things that I haven’t been able to do in months. And at this point, my health is free and clear.
I’ll never be able to repay the debt I feel toward each person who helped me, but if I’m able to help the next person that’s something. I’ll pay it forward. My donor, my support system, my doctors—these people gave me a chance to continue to be with my three kids and watch them grow, to go to my nephew’s wedding, to be a part of my daughter’s COVID-friendly graduation. To register (Heidi’s Fundraising Page) and walk in the Canadian Liver Foundation’s STROLL for LIVER again. To have a chance to share my story with you and encourage you to stay strong. Have hope.