I'm fourteen years old and I was diagnosed with auto immune hepatitis when I was eleven.
Let me introduce myself. I am Alyssa and I have auto-immune hepatitis. I am thirteen years old and one of my favorite hobbies is acting. I also play volleyball. My liver disease journey started in 2019 when I was getting a 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 idea what was happening to my body or what any of the things I was being told meant. I felt so confused and worried that something was very wrong with my body. 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 liver disease. 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. Hearing the word biopsy and not knowing what the procedure was, frightened me. I didn’t feel sick and was carrying on my normal everyday life. After almost a year of not knowing what my liver was going through, I was anxious to understand more. I was more than ready for my biopsy and it was scheduled for January 2020.
On the 15th of January 2020 I woke up nervous and a little shaky. I remember arriving at the hospital around 6:30 in the morning with my mom. I was not allowed to eat or drink at all that morning. We walked into the building and had to wait for a while to be admitted. I was nervous this whole time, but I never really showed any emotion while I was waiting. I didn’t want to worry my mom even more than she was. But every minute I was waiting the fear was building up inside me. It was pretty scary to be there, to have this procedure and not even know what the outcome would be.
They gave me grippy hospital socks to walk around in so that I wouldn’t slip and fall. I also changed into my hospital gown. I felt like a hospital princess, everyone was checking on me and making sure I was comfortable. All that changed when it was time to insert an IV in my arm. I had been anticipating and envisioning the moment in my mind, 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. All the buildup of the fear and anxiety inside me erupted suddenly and forcefully.
I was able to calm down after a while. My mom and I watched Animal Planet for about 3 hours after the commotion of the IV insertion. I remember thinking the hospitals don’t have the best channel selection.
Finally, it was time for the biopsy. Before I went in for the procedure, my nurse started giving me medication through my IV to calm me down. I remember laughing all the way to the surgery room. My dad wasn’t able to be there at the hospital with me, so I had a stuffed elephant that he had given to me right beside me at every moment. 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 medication that would keep me asleep for the process. I remember seeing him do that but then everything disappeared. When I woke up, I was in a different room with my mom and a nurse. I had a cup of water in my hand. The next thing I remember was being pushed in a wheelchair and out to the car. I was not allowed to participate in volleyball or PE for about a week because the doctors didn’t want to risk me opening up the cut and they also wanted to give my liver time to heal. All of 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 was in shock at hearing this because I didn’t think that something like this would ever happen to me. 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 I would probably always have this disease. I had so many questions, but I really wanted to know what the next step would be for me. There is no current cure for autoimmune hepatitis, but I am hoping that one day doctors will be able to find a cure for auto-immune diseases like mine.
After my diagnosis, I started taking a steroid called prednisone and soon after, another medication called azathioprine. Both medications would be used to weaken my immune system. The dose of prednisone that I was on 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. But I still had to bear the pain of seeing myself in that way.
By late September 2020, my friends were all able to go into hybrid learning during Covid. However, I was not able to join them because the steroid caused me to be too susceptible to Covid. I felt left out and disappointed that I couldn’t return. I have always loved going to school so this really made me feel down and sad.
On October 10th I received the good news that I could go back to school and continue to play volleyball soon. On October 19th I went off of 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. 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 so done with steroids at this time that I had no interest in going on them again. 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. This time my dad was with me. This test was a machine that would tap me in the side to check the flexibility of my liver and the scarring level. I had to lay like a banana in order 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 had to get an 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. Doing this made me anxious but I had to push through. Sometimes I would have to stop breathing after I breathed out which was especially difficult. We finished the ultrasound and headed home. After many more blood tests, my liver enzyme levels were normal, and my scarring turned out to be F1 out of F4, so I had barely any scarring on my liver. 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 normal without the steroid. Today, I am still doing good!
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. Doctors are learning so much about the liver disease every day and we can do our part by spreading awareness to those around us. The best way to think about your liver disease is that this is a part of you, and it is only one factor that makes you special. If it takes you a while to come to terms with this that is okay because everyone is different, and you might just need some more time to accept this amazing part of you. You are a strong person who can spread the word so that more people can understand what you or another person might be going through. Liver disease can happen to anyone of any age, and it is important to know that liver disease can be caused by other factors other than behavioral choices. Having a liver disease does not affect who you are as a person and despite it being a part of who you are you can still live a normal life.
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.
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