November 18 is my liver-versary. On that date in 2015, I received the gift of life in the form of a gently used liver from a courageous stranger who has become my hero. Just one year prior, I was diagnosed with PBC. It was a disease unknown to me, but on my crash course to learning all I could I realized that I’d had symptoms for most of my 55 years. As I child I bruised so often my mother had me tested for leukemia. I had terrible itching and was advised to skip bubble baths and use all unscented soaps and paper products. What I thought was a year-round tan was hyper-pigmentation. And the fatigue was surely from stress, aging and menopause. But it wasn’t until I had difficulty recovering from a respiratory infection and turned yellow that we began a deep dive into what was wrong. I was fortunate to have a smart team of doctors who ran the right tests and got me in to see the right specialist. While I tried URSO, I was already stage 4 and my decline was rapid. After 3 months in hospital and with just a few days left in my transplantation window, my angel donor and a fantastic team of medical professionals gave me life. I am passionate about paying it forward by encouraging registration to be an organ, blood and tissue donor, and by educating & supporting others in a similar situation.”
When I was asked to write this I was not sure where or how to begin. One thing I do know is how fortunate I have been on this journey for the past seventeen years, starting with my family doctor who noticed an anomaly in the results of my blood tests. When my diagnosis was confirmed by the gastroenterologist I phoned my closest friend from the parking lot, by the time I was home she had researched primary biliary cirrhosis and found patient support groups and a conference!After days of dithering I phoned the Canadian support group resulting in meeting with three other patients and as a result part of my life changed! Learning more about primary biliary cirrhosis from the medical profession and online, meeting other patients, becoming a volunteer. Today, I know the awareness and knowledge I have acquired about primary biliary cirrhosis over the years has helped me to live a full life and to be as active as I wish. Today, I know that volunteering and helping where I can either by supporting a patient or helping raise funds for research gives me a great deal of personal satisfaction. Today, I know the friends I have met online and in person over the years in Canada and in England and across the world have enriched my life.
I was diagnosed after testing in Jan/Feb 2014 by a gastroenterologist/hepatologist and was started on the Urso right away. In June 2014 I opted to have the Fibroscan done in Toronto and that indicated I was in stage 3 of liver fibrosis. A year later, this July 2015 I had a repeat and it indicated I was in stage 2. The specialist told me that I am his first patient to have had the Fibroscans done. He had no answers as to why I would change stages other than “you have to remember that tests are only man’s interpretation” and to wait until I get the results from next July to get a clearer picture of what’s happening. I have a strong faith in what God can do, and your newsletters and information will be very helpful as I continue this journey in life.I’m a Registered Nurse (shift Supervisor) in long term care and worked a 12 hour nightshift last night. I’m finding the 12 hour days to exhausting so I prefer the nights as they are less demanding for the most part. Waking up at 5:00 and then working 12 hours is getting difficult to do. I have a work accommodation for no more than 2 in a row so that is helpful as well. Other than fatigue I really have no complaints 🙂 Yes, I do have an excellent Physician (Dr Murat in Huntsville). He has gone beyond his specific area of expertise with tests and follow-up. I am extremely grateful.