I got to interview my friend Kirsten about her dad’s autoimmune disease. As you already know we met in high school, and we visited at lunch time, and we had our group of friends. In our friend group we had Annalise, Kirsten, another Kristen, Karla, and Marisa. I knew her dad from special Olympics and that walk with special Olympics around the lake every spring! I didn’t understand why her dad passed away or got sick. When she lost her dad, it was very sad and hard time for everyone! He was an amazing person and loving daddy! I can’t imagine how it felt like losing a dad or a parent so young. Thanks so much for your interview about your dad! He was such a hero! I hope people can learn about Kirsten and her dad!
Kelsey: What’s is an autoimmune disease?
Kirsten An autoimmune disease is where your body can’t recognize it’s own cells compared to foreign cells so it attacks your normal cells. One very scary thing about autoimmune disease is that they cannot be cured but rather treated or managed and can therefore recur at any point.
Kelsey: What autoimmune disease did your dad have, and what’s does it cause?
Kirsten: The autoimmune disease my dad had was PSC (Primary sclerosing cholangitis). PSC causes scarring of your bile ducts, therefore narrowing them and causing a buildup of bile into the liver which damages your liver. He experienced a lot of fatigue, nausea, stomach pain, unexplained weight loss and some changes in his urine and bowel movements just to name some vague symptoms he had.
Kelsey: When did your dad get diagnosed with PSC?
Kirsten My dad was diagnosed in November 2006 with PSC after over a year of seeing multiple doctors and going for multiple tests. He was told the only treatment was a liver transplant. After a four year wait, he received his live saving liver transplant on January 13, 2011. He thrived after his transplant and had five wonderful years of making memories with us, travelling the world with my mom, Rita, and just living with such gratitude towards his liver donor and family. Unfortunately, in July 2016 he started to feel unwell again and it started a long process of more tests and procedures before finally confirming on December 31, 2016 that his PSC had officially recurred and he required another liver transplant. He fought hard, and we fought hard for him, but he became too ill while waiting for a liver to come available and he passed away on April 25, 2017.
Kelsey: Kristen explains what’s her dad was like a person.
Kirsten My dad also worked hard to educate people about autoimmune diseases, liver disease, and organ donation/transplants. A big stigma behind liver disease is that many people associate liver disease with substance abuse or alcohol misuse. My parents were both non drinkers, in fact I can maybe count on one hand the number of times I saw him even have so little as a small glass of wine.
Kirsten: One really amazing thing is that my parents were the first in western Canada to meet his donor’s family members. We communicated with them through letters and my parents were first able to meet the donor’s wife, and then on a later trip were able to meet one of his daughters. We are still so grateful for their generous gift during their time of grief in supporting their husband/father’s wish to be an organ donor.
Kelsey: Where did your dad work?
Kirsten: He worked for ATB Financial for many years and was very involved in the community. He worked with Special Olympics Camrose, Camrose Friends of Stars, the Camrose Kodiaks… the list goes on! He loved to cook and bake and when I was working at the hospital in Camrose would show up at midnight sometimes with fresh cookies for all of us as a treat on the night shift. He was so supportive of us, and I could always turn to him for advice or support. He always had time for our friends too and was a father figure to many of them as well. He volunteered and did fundraisers with the Canadian Liver Foundation (which my mom and I continue as “Larry’s Girls” in the annual Stroll for Liver fundraiser).
I’d like to ask everyone to consider being an organ donor, you can’t take your organs or tissue with you when you’re gone! Register your intent to donate and make sure your family is aware of your wishes as they do get the final decision if something were to happen to you.
Here is the link to register : https://myhealth.alberta.ca/Pages/OTDRHome.aspx
National Organ and Tissue Donation Awareness Week (NOTDAW) raises awareness about the critical need for more donors across the country and encourages Canadians to register their decision and to talk to their loved ones about organ donation.
In 2022, National Organ and Tissue and Awareness Donation Week will take place April 24-30. Green ribbons, and green-lit landmarks, pop up across Canada during NOTDAW to honour the donors and donor families who gave the gift of life. They also acknowledge the thousands of patients in need of a transplant and those who have died waiting. Canadians are reminded to register their intent to donate and to discuss their wishes with family and friends. Visit organtissuedonation.ca to find out how to become an organ donor in your province.
I miss my dad every day. I was truly blessed with the most loving dad. He had a great sense of humour, was generous, kind, smart, and a great leader. He and my mom loved each other so much and watching them showed me what I wanted in a partner and marriage.
Kelsey: How did your family act when your dad got really unwell?
Kirsten: We were scared when he got sick but just wanted to support him and get more information about what to expect and what we could do. For liver transplants a live donation can be done as the liver regenerates itself so they take one lobe of the liver and transplant it into my dad and it would grow into a full liver in his body as well as regenerate in the donor. I was too young and wouldn’t have been a similar size match for my dad so I couldn’t get tested which was so frustrating for me. Our next-door neighbor as well as many of my cousins got tested but no one was able to be a safe match.
Kelsey: What’s your tips for other people who have the same disease?
Kirsten: I think for anyone with an ill parent it is so challenging as we’re used to our parents protecting us and supporting us so it can be overwhelming and hard to wrap your brain around the fact our parents can get sick. I was so fortunate to have such a loving and supportive dad and he fought so hard for himself and for others as an advocate. I learned a lot just by watching him. It also does make you grow up faster in a way as you start to worry about them and want to care for them rather than the other way around. The important thing is to ensure you don’t just fixate on the fact they’re sick. Remember that they’re still your dad or loved one and ensure you still take time to have fun and laugh and enjoy the time you have with them no matter what.
Kelsey: What’s your favourite memory of your dad?
Kirsten: I have so many amazing memories with my dad, it’s hard to pick one to share! He loved to cook and bake, and one of my favorite things was he made apple cinnamon pancakes for us many weekends. He’d get them started so when we woke up we’d smell them and want to come running down to eat them. He also loved to come see me when I was in nursing school in Edmonton and he and my mom would take me for lunch or dinner and make sure to send me home full and with lots of leftovers. He’d also usually fill my fridge and cupboard with groceries and treats (like my favorite ice creams, or at Valentine’s a giant bulk bag of conversation hearts). He was always so proud of us and our accomplishments and never made me feel bad about myself in any way. He and my mom truly encouraged me and kept me going especially when nursing school was really hard. Even after I graduated, I remember I was studying to write my licensing exam (the NCLEX) and he was admitted to the hospital in Edmonton as he was quite sick again, but he made sure to send me encouraging messages about how I’d worked so hard and was so smart and had a good head on my shoulders, that he knew I’d be successful. When I was working at the hospital in Camrose he loved to show up late at night when I was working the night shift with fresh cookies or muffins for myself and my coworkers (so fresh they’d still be warm from the oven!) or my mom and him would bring me a late night teen burger from A&W or fresh berries on ice cream for a treat at work. I was so spoiled and so loved. When we had hoped he’d get his second transplant it was actually scheduled to be the same day as my birthday and he joked the night before that he’d need his own cake or I’d have to share mine as it was his “new birthday” or “liverversary” as we’d call it. Even when he was so sick and tired, he always was joking and making us laugh.
I hope you learned something about autoimmune disease and find our more about if donating organs & tissues is right for you! You can save a live! Thank you Kirsten for sharing your Dad’s Story.
The Larry Gibson Memorial Walk is May 7th – More information here. https://www.specialolympics.ca/alberta/events/sat-05072022-1000/5th-annual-larry-gibson-memorial-fun-walk-run-soa-camrose