Alyssa McCarty

Let me introduce myself. I am Alyssa and I have auto-immune hepatitis. I was diagnosed at age 12 but that has not stopped me from pursuing my passions. My liver disease journey started in 2019 when I was getting routine blood work done for my annual physical. When my doctor received the results of my test it revealed that my liver enzyme levels were slightly elevated. I had no clue what this meant and did not even question that it could possibly affect the rest of my life. We debated on whether this could be because I was becoming healthier in terms of diet and exercise, or if this could be something more alarming and dangerous. I started off by getting an ultrasound to see if the doctors could see signs of liver damage or scarring. Following the ultrasound, I had many blood tests done to constantly check the level of my liver enzymes. I officially became a liver patient and began visiting my gastroenterologist, Dr. Grant, at Children’s Hospital of Orange County (CHOC) in April of 2019.

​In November of 2019, my doctor ordered a biopsy of the liver. At the time I did not understand what a biopsy meant nor that it could change my life. I asked many questions about the procedure until I felt comfortable with my knowledge of what was going to occur. For the most part I didn’t feel sick and was carrying on with my normal everyday life. After almost a year of not knowing what was causing my elevated liver enzymes, I longed for answers. My biopsy was scheduled for January of 2020.

On the 15th of January, 2020, I arrived at CHOC around 6:30 in the morning with my mom feeling anxious. As we waited to be admitted I remember receiving well wishes from my friends. I could feel the anxiety pooling in my stomach but I kept it internalized. Being so young, I was not sure how to stop my fear from overcoming me. It was scary to be there, but I kept reminding myself that all that could come out of this was good.

​Once I was brought to my room, I was given grippy socks and a hospital gown. I felt like a hospital princess with everyone checking on me and making sure I was comfortable. Without acknowledging my fear I figured I would be fine for the procedure. All that changed when it was time to insert an IV in my arm. I had been doing so well at keeping all of my nerves inside, but when they put the IV in my arm a rush of emotions came over me. I was shaking, crying, and sweating all at once. This was my first time in a long time having a procedure and the IV caused a release of all the pent up emotions.  I was able to calm down after a while. I watched Animal Planet for about 3 hours and learned how to cope with all of the emotions I was feeling. 

​Finally, after a delay in my procedure it was time for the biopsy. Before I went back I was given medication to help me relax. I remember laughing all the way to the surgery room and seeing fuzzy figures around me. As I was pushed into the room, I saw my name on a window that led into an adjacent room. Then, the anesthesiologist lifted my hand to administer the anesthetic. I remember feeling a dizzying sensation but then everything disappeared. My first memories after the procedure are blurry and consist of me holding a water cup and seeing a nurse take out my IV. The next thing I remember was being pushed in a wheelchair to the car. I was not allowed to participate in athletics for about a week because the doctors didn’t want to risk me opening the small incision and they also wanted to give my liver time to heal. All the nurses and doctors that helped me that day were amazing. I appreciate every single one of them for helping me through that process. If I needed to, I would get another biopsy because they really aren’t that bad. The more nervous you are the worse it is so the best thing to do is get your emotions out instead of keeping all of them stuck inside of you.

​February 14th, 2020 was the day I learned I have auto-immune hepatitis. I never thought that I would ever be diagnosed with a chronic illness but that is the way it ended. I wasn’t sad at all, but I just didn’t know what this meant for me in the future. When I asked, I was told that there is not a likely chance of me ever being cured. I am hoping that one day doctors will be able to find a cure for autoimmune diseases like mine. 

After my diagnosis, I started taking a steroid called prednisone and soon after, another medication called azathioprine. The steroid was used to weaken my immune system to allow for the azathioprine to protect my liver. However, the dose of prednisone that I was on at first was too much for me to handle. I felt lightheaded all the time and I couldn’t participate in sports. I communicated this to my doctor, and he lowered my dose. Throughout my time on prednisone, we would gradually decrease my dose as the azathioprine started to work. 

Around May of 2020, I realized my body was starting to swell, especially my face. I didn’t feel like myself at all. By June, I had stretch marks on my thighs and chest. My face was swollen, as well. My confidence took a hit, and I didn’t feel good about myself at all. I had gained about 15 pounds because the medication caused me to want to eat more. It was a terrible feeling because it wasn’t my fault that I was swollen or that I had gained weight. However, I still had to bear the pain of seeing myself in that way. 

By late September 2020, my friends were able to go into hybrid learning during Covid. I was not able to join them because the steroid caused me to be too susceptible to illness. I felt left out and disappointed that I couldn’t return as school has always been something I enjoy. 

On October 10th I received the good news that I could go back to school. On October 19th I finished my steroid and returned to school. I was thrilled to return to in-person school with my friends. Also, I was overly ready to start feeling like myself again. It was a slow process of waiting for my swelling to subside. Almost all the swelling and the weight I had gained were gone by the time December came around. During those two months that I was still waiting for the swelling to go down I dealt with feelings of self consciousness. However, one thing did remain. The stretch marks remained on my body. I have learned to love these marks and I view them as an accomplishment. I was able to push through a hard time and now every time I see them, I remember how lucky I am to be where I am now. 

I started to see Dr. Yang in late December 2020.  My liver enzyme levels had risen again so I needed to go on another steroid. I was exhausted with having to be on steroids and had no interest in taking them again, yet I persisted. The new steroid called Budesonide caused no side effects. I was thrilled. Later that month I had an elastography test so the doctors could see how much scarring there was on my liver. I had to lay like a banana to open up my ribs so the machine could work. My scarring levels came back as F2 out of F4. To confirm these results, I went for another ultrasound of my liver. 

In January 2021, I went back to the hospital to get my ultrasound. On the way to the hospital, there are paw prints that lead you to the doors and I remember my dad jumping on them all the way there. He made me laugh and forget my anxiety and worries. The ultrasound ended up taking about an hour and I remember it being quite difficult. My job was to either not breathe or to hold my breath. It was very uncomfortable with the ultrasound device digging into my ribs but in the grand scheme of things was not too bad. After many more blood tests, my liver enzyme levels were no longer increasing, and my scarring turned out to be F1 out of F4, so I had barely any scarring on my liver. Seeing these normalities, my doctor then decided to try and take me off of the steroid. In April 2021, we received the news that my liver enzymes have been able to stay consistent without the steroid. Since then I have been going for annual ultrasounds and elastography tests. I also get my blood drawn every 2-4 months depending on any signs that I could be getting worse. As of January 2024, my enzyme levels are slowly increasing but not at a rate of alarm. This will likely be my normal state for the rest of my life.

For now, I am just hoping for the best and living every day to the fullest. I still love my body and my stretch marks despite what the steroid has changed about me but at times my confidence does dwindle like any other person. Doctors are learning so much about liver disease every day and we can do our part by spreading awareness to those around us. I can understand the frustration and unfairness that comes with a diagnosis and it is important to know that you do not always have to act strong. People with any kind of chronic illness go through so much and I hope they know that it is okay to have bad days. Taking meds every night is a hassle and will never be fun so I am so proud of those who have to do any kind of treatment. It will never be easy but I believe that these experiences I have gained through this process have molded me into the person I am today and I am genuinely grateful for having to have dealt with all of this. Although I am grateful, I still look back at my eleven year old self and wish that I was not put through all of that.

Throughout all my visits with my doctors, I have always appreciated that they prioritize speaking directly to me about my health first before speaking to my parents. This has instilled a sense of confidence within me. It helped when I was being told everything I needed to know firsthand versus hearing the sugar-coated version later from my parents. It means a lot to me how honest my doctors are about everything that is going on and all the tests I needed to have done. My doctors have always advocated for me and made me knowledgeable about my own disease because no one around me can feel what I am feeling.