CLF: Did you find your medical background helped you understand and to navigate your diagnosis

Maria: It’s interesting to have personally gone through an illness of this magnitude and being on the patient end. I was using my skills to research what the problem was and was still very confused, honestly.

My diagnosis really wasn’t that clear. I had started off with severe pain in my gut which ended up being gallstones. The follow up surgeon found my liver enzymes weren’t coming down and all that investigation takes time seeing specialists. I was convinced it was purely from my gallbladder. My medical background just helped me to be more worried, especially because the diagnosis was not yet formed and complex. Through further tests and investigation, my gastroenterologist then suspected primary biliary cirrhosis (PBC).

CLF: When were you first officially diagnosed?

Maria: I saw a hepatologist in 2019 who did a FibroScan of my liver and confirmed I had developed PBC. This was at stage one of fibrosis, not even cirrhosis. I became more and more symptomatic and developed esophageal varices. This developed into severe ascites which required me to get my stomach drained on a weekly basis. I gained 10-20lbs of fluid every week.

Eventually, because of the pressure of the ascites on my colon, I was rushed into an emergency hernia surgery which prompted my leave from work. I have yet to return.

CLF: How did your liver transplant journey begin?

Maria: I was accepted into the transplant program in January 2021. I did tests and evaluations and got on the deceased donor list in March. I was still in denial; I believe I was in denial the whole way through. I had fears about death and leaving my young son and my family. I felt useless, worthless and did not accept the diagnosis of end-of-life liver disease as I wasn’t actually in pain at that point. The only thing I was complaining about was extreme fatigue and ascites. How did they really know my liver was cirrhotic? My only scan was at stage one – how did I get here? Once I got on the list, I immediately thought, am I going to get a call today? I started to build a nervous anticipation – I was waiting for a major life change. Am I going to make it through the operation? It felt like a looming uncertainty – I didn’t know what to do and I felt lost. This is when I reached out to counselling to help deal with the start of my liver transplant journey.

CLF: Through your transplant journey, you had a living donor, how did that whole process go for you?

Maria: The liver transplant process has saved my life and was overall a positive experience. I was told that a living donor would be a good option for me because PBC patients do really well with living donor donations, as it was a fairly simple transfer. Coincidentally at the time, a connection of a friend of my husband had sent along his social media campaign – his ask for a kidney. I decided that while I was sitting waiting for a deceased donor, to increase my chances, I would create my own Facebook campaign. Within the first two weeks of the campaign, I had six people register and fill out eleven pages of forms to be my living donor. A combination of people I knew and strangers. I was feeling very overwhelmed and blessed with the kind outpour of love and support.

My living donor ended up being a very close friend of mine, who is part of my ‘mom’s support group’. She was a perfect match and I had asked her “Why do you want to do this for me?” She had lost her husband to colon cancer at 40 and had three kids at home. She told me it was a “choice, not an obligation”. I am so grateful that we recently celebrated our one-year liver transfer anniversary in the presence of family and friends.