Cara

Autoimmune Hepatitis

Two years ago, at 16 years old I started getting sick, and I did not know why since I was an active young girl who was always in good health. I would go to doctors, and I was told that I was dehydrated and needed to drink cactus water. Fortunately, I ended up moving states and found a new doctor who ACTUALLY listened to me.

Around the time of my move, I started to get an itch. It was the kind of itch that almost drove me crazy. It was so bad that I scratched until I was raw, and I was still itchy. I told my doctor about all of the symptoms I was experiencing. She, my mother, and I thought it was going to be my thyroid (my grandmother has Hashimoto’s Thyroiditis) as my symptoms correlated with that. Because of the itch I had, she decided to run a full hepatic panel. A couple of days later, she called and told me that she thinks I have autoimmune hepatitis and I need to see a specialist.

I saw the pediatric gastroenterologist and go more blood tests, an abdominal ultrasound, as well as a liver biopsy. All of the results came back to confirm the diagnosis. Others may have been devastated when hearing this, but I was relieved. I was finally able to explain what was going on with me. I clearly wasn’t dehydrated as a previous doctor had told me.

I started an oral steroid, but it did not work. I started the dreaded prednisone. This was when the hell started for me. Prednisone made me feel horrible. I gained over 40 pounds, and I developed steroid induced hyperglycemia, depression, and PTSD. Needless to say, I had gone through a lot in a short amount of time. Whenever I looked in the mirror, I wouldn’t see me. I saw a bloated, swollen vessel that wasn’t the happy thin girl I had seen just a month earlier. I had disassociation almost every day for a few months. I felt like I was in a dream and that everything wasn’t real. I was told that this is a trauma response to what had happened.

Over the year and a half, the prednisone alone didn’t work. We tried a chemo med called 6-Mercaptopurine. That didn’t work. We tried infusion therapy of Rituximab. That gave me anaphylaxis. Finally, we tried Cellcept, an anti-rejection drug. In correlation with prednisone, my numbers have been normal for a few months, and I am waiting on getting a third liver biopsy to see if I am in remission. 

All of this has happened since June 26, 2017, at 16 years old. I am now 18 years old. I have only told the summary of the story. I have experienced more than any person should at this age. I had spent so many nights at a hospital, and I had spent so many nights crying fearing that I would die and feeling like I was so ugly. Since then, I have lost 23 pounds, no longer have diabetes, and am working on coping with everything else. In the past, I never thought that I would get through this. I thought it would rule my life.

Now, I am excited about my future. It is bright and filled with joy and happiness. This fall, I will be going to college trying to figure out my life.

Sometimes, it takes getting through something challenging to see the beauty that life possesses! I no longer take being healthy for granted.

When asked if she has any advice for liver patients or other members of the liver community, Cara said, “I know that it is super cliché, but this too shall pass. I had to remind myself of Ecclesiastes 3:1-8 regularly. Here, it talks about how there is a time for everything: a time to live, a time to die; a time to celebrate, a time to mourn; etc.”