Hello my name is Victoria Saros (Micola von Furstenrecht), I am 25 years old and I'm waiting for a liver transplant. At the young age of 8 weeks old, I was diagnosed with a rare liver disease called Biliary Atresia. I was taken to Riley Children's Hospital in Indianapolis where I had undergone surgery called a Kasai Procedure. All went well needless to say but it isn't a cure, it can be seen as a temporary fix and or a bandage. It is a wonderful procedure do not get me wrong, you always want to try and keep your native organs if at all possible but it isn't guaranteed to be a permanent fix. Yearly checkups were required and oh did I love them! My parents always made it fun, we went to museums, the mall and even a concert after my appointments. I truly was blessed with the best when it came to my parents, they've always been extremely supportive and loving to my sisters and I. As a family we went to every appointment of mine together and had fun. I was always an active kid, I liked to prove I can do anything boys can do, hence almost all my childhood friends being guys. The best group of friends makes for a memorable and fun childhood, which I hold close to my heart. Fast forward to high school because that's when I had my first bump in the road. Junior year, a time where kids are starting to think about colleges and what parties they are going to go to on the weekend. It was different for me, let me draw you a picture. I hadn't been feeling well, missed two days of school and it rolled right into thanksgiving break. You know that saying "you know your body best", boy did I know something was wrong! I'm a girl with a big appetite and I skipped thanksgiving dinner... that was unheard of! I came downstairs after everyone had left the table, at this point I'm completely hunched over and wrapped up in a blanket shivering and I asked for more medicine. I glanced over at my grandma drinking a cup of coffee at the table and with one look she said to my mom "she needs to go to the doctor!". My mom made the decision to take my grandma back to her house, once she came back and she picked me up, off to the hospital we went. The ER diagnosed me with cholangitis, I hadn't had an episode since I was an infant after my procedure so I was unfamiliar with the situation at hand. My mom gave me a quick run down of everything along with the doctors and before I knew it I was on an ambulance ride from Mishawaka to Indianapolis. I'm there for 4-5 days with close monitoring and then sent home with a picc line inserted so we could do the medication from home. After all that, 2-3 weeks go by and I'm back to be almost normal and no longer need medication. Now to my downfall and boy was I unaware what was going to unravel after I got back from my honeymoon. My husband Paul and I land in Chicago back from our honeymoon July 25th 2023 and August 27th 2023, I have my yearly check up. All goes well until my fibroscan and I knew the results were bad but in that moment I chose to wait to get a call from the doctor rather than wait to talk with him again but I had no clue it was as bad as it was. Keep in mind my fibroscan only reads the stiffness of one's spleen, my doctors also did not know how bad things were about to get either! Two weeks later, I'm in the ER with chest pain and stomach pain and breathing problems. I get discharged because we can't find anything. Another 3 weeks go by and I'm back in the ER again, same thing. November 3rd, I'm at home alone and I'm feeling like death, I made the decision to go to urgent care. I get labs done and get told I have pancreatitis and in my gut I knew it wasn't that but much worse. I call Paul and tell him I'm driving the hour to my parents and having them watch our dog while I get myself to the ER. I'm at the ER for 2 hours and they are at a loss. At this point I'm completely jaundice, I said "this is an episode of cholangitis, we need to start getting me on medication and get ahold of my doctor in Indy".
I'll post the next bit in a couple of days but here's the beginning of my journey
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