One Mother’s Fight to End Liver Disease

Jenna McKinlay, American Liver Foundation (ALF) Liver Life Advocate®, entrepreneur and loving mother of three young boys was used to feeling tired every so often, but in 2018, something felt different. Jenna said, “My husband and I were at a very overwhelming time in our lives with our boys, aged one, three and five, running two businesses, and moving homes. My symptoms were familiar to me; I had been diagnosed with ulcerative colitis and Crohn’s Disease – both inflammatory bowel diseases – at 17-years-old, so out of fear that these horribly painful flare ups could be an indication of my diseases worsening, I went to see my doctor – all three boys in tow.”

Jenna’s bloodwork came back showing high liver enzymes, and she was immediately admitted to the hospital for additional tests. After about a week in the hospital, away from her boys, Jenna was diagnosed with primary sclerosing cholangitis (PSC), a chronic, or long-term, autoimmune liver disease that slowly damages the bile ducts. Jenna said, “Another autoimmune disease to add to my list!” There is no cure for PSC and while treatment can slow disease progression, most people living with PSC will require a lifesaving liver transplant. Jenna said, “I was told it could be 10, 20 or 40 years before I needed a transplant, but lo and behold, it only took my liver a mere six years to decline.”

In September 2023, just five years after her initial diagnosis, Jenna was once again admitted to the hospital after being unable to recover from a common virus; her immune system had completely shut down. Jenna said, “For over a year I was sick with more than the occasional flare up I was used to. I had a constant fever and suffered severe malnutrition which led to the need for vitamin infusions three times weekly which put a major strain on our finances. I experienced digestive complications which left me tethered to the restroom for hours, and I had extremely itchy skin which kept me awake all day and night. All this made it extremely challenging to manage my household, kids, homework, sports/activities, and my small business, which I had worked for more than 15 years to establish. I can remember sitting in the car during the boy’s baseball games, curled up in the fetal position from being unable to breathe through extreme pain and fever chills – refusing to go home. By God, I would be there as long as it meant I could show up for my boys. As long as I was here on this earth, I would be at their games in any capacity, just so they would know their mama was there… if not forever, at least for now.”

After much research and painstaking outreach, Jenna found a transplant program to review her case and was accepted in March 2024. She was screened in June 2024 and added to the liver transplant waitlist in July 2024. Jenna said, “Merely weeks later, on August 1st, I was on the operating table, praying my soul out for salvation. I had an angel living donor scheduled to save my life in September, but I was in active liver failure and if I didn’t receive a miracle liver transplant that day, I would have died; I was that close to death.”

Jenna received the gift of life on August 1, 2024, through a deceased donor liver transplant. She said, “Since receiving my transplant nine months ago, I am still in shock and disbelief – almost numb to it all. Finding ALF was a blessing, and I hope to heal within this wonderful community while making a difference. I want to help save the lives of mothers, husbands, children and the many others like me, affected by liver disease.”

Thank you, Jenna, for rallying in the fight against liver disease and for recently joining us for the Liver Life Advocacy Summit on Capitol Hill. Your strength and resiliency are admirable, and we are grateful for the example you are setting for your boys and the rest of the liver community. Together we can achieve our vision of a world free from liver disease. For more information about autoimmune liver diseases, liver transplant, or to get involved in our advocacy efforts, please visit our website.