My name is Mackenzie, I am originally from Pittsburgh, PA and recently moved to Austin, TX. The summer of 2021 I fell incredibly ill, incredibly fast. Over the course of 6 weeks, I had nausea, loss of appetite, extreme fatigue, followed by dark urine and jaundice, and was admitted to the hospital on the brink of going into acute liver failure. Before I knew it, my parents were on the next flight to Austin and I was trying to understand how I went from a healthy, 26 year old to being consulted by the hepatic transplant team in the hospital.
Miraculously, my liver started to heal on its own and I was discharged to be followed outpatient for further diagnostic testing under the care of Dr. Landaverde, a hepatologist at the Texas Liver Institute. My journey has been unique. While I presented as classic Autoimmune Hepatitis (AIH) with a bad “flare” that caused the rapid onset of symptoms, all of my AHI antibody tests have come back negative. At first, my liver biopsy in conjunction with my extremely elevated liver function tests were most consistent with AIH but a drug or toxin-induced autoimmune-type reaction was still a possibility. After further review from other pathologists and my hepatologist, I have predominant plasma cell infiltrate confirming my diagnosis Autoimmune Hepatitis. The good news is although I have slight necrosis (dead cells/tissue) and mild fibrosis (fibrous tissue in response to injury or damage), we are optimistic that my liver will regenerate and heal itself. I am incredibly lucky we caught this early.
In addition to all of this, I was also diagnosed with Celiac Disease through various IgG and antibody tests. Talk about a double whammy! Having started high dose prednisone immediately after my liver biopsy, it has been my best friend and my worst enemy. My liver function tests are almost back to normal but the rashes, infections, insomnia, swelling, joint pain and muscle cramps have been stifling. However, I will take all of the side effects in order to continue to get my liver healthier each day.
My next step is to start Azathioprine, another immunosuppressant medication once I am tapered further with the prednisone to continue to suppress my immune system from attacking my liver. I continue to get weekly blood work and work closely with my hepatologist to determine the next steps for my body. As I look back, I went from starting a new job across the country, living my best life traveling, having fun and spending time with family and friends – to adapting to a totally new lifestyle living with Celiac Disease and Autoimmune Hepatitis. I have spent a lot of time wrapping my head around what I have been through, and I want others to know that they are not alone.
Whether you are managing a chronic illness or dealing with liver disease, there are others out there that can help make dealing with your new normal, easier. I continue to try to be incredibly positive and optimistic about my diagnosis, my prognosis, and my future. Even though my journey thus far has been short, I am committed to sharing my story and advocating for the importance of research and awareness for Celiac Disease, AIH and liver disease.
The one thing that I know today that I didn’t know a few months ago is that you are a lot stronger than you think you are! This has been my mantra through this whole journey. It’s hard to get lost in the “why me”, but you were given this set of cards. You can’t fold your hand yet, your next card dealt to you (whether it be as simple as good news, good blood work, tapering off of an immunosuppressant, going into remission, or even a new liver you have been waiting for) may make your hand, a winning hand.
You can follow Mackenzie’s story on her new blog mjhilliard.wordpress.com
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