My journey began when I was 8 weeks old, when I went down to Riley Children’s Hospital in Indianapolis, Indiana to receive the Kasai Procedure. The procedure unfortunately does not work for everyone, but I was fortunate enough to be a part of the lucky few that it has worked for.
After my procedure I continued on with my life and had monthly, which turned into yearly, check ups down at Riley. I was able to enjoy my life as a normal kid, but always missed out on being able to play sports.
When I was in the 4th grade my doctors approved for me to play sports with a few exceptions being that I had to be careful and nothing of physical contact. Life was going great and my doctors would always tell me I was worth a million bucks, but in my junior year of high school out of the blue I fell ill.
I was never one to complain about pain and take time off of school, but something just didn’t feel right. The year was 2014 and it was Thanksgiving and I knew I needed to go to the hospital, I was having hot flashes and I could barely walk. I was in so much pain which caused my back to be completely hunched over. I got to my local hospital and from there I was then was transported down to Riley where I was told I was having an “episode” of Cholangitis.
I was unfamiliar with what it was at the time and my mom had informed me that I had gotten it before when I was a baby after my Kasai procedure, which was relatively normal given the circumstances. I stayed in the hospital for about 5 days and then went home with a PICC line in, so I could give myself my medication. I received at home care once a week from the local hospital for about a month until I was all better and then got the PICC line removed.
Fast forward to my sophomore year of college, I was scheduled for an endoscopy that my family and I went in thinking it was going to be easy and no big deal. While I was under, the surgeon found that I had a severe case of esophageal varices and he had to band them. The doctor had to put on a total of 11 bands, which caused a decent amount of discomfort. This lead me to having to get an endoscopy done every other month and then it all finally calmed down.
As of I now, go in for an endoscopy once a year, which is a lot easier and less stressful for me. The thing I remember most from all of this was the feeling of defeat. I had done so well all my life with my health and to have gotten “sick” twice within a 3-year span of time was upsetting to me. However, I told myself “If you dwell on the things you can’t change nor control then how can you create or build yourself a positive future”.
I made the decision to no longer worry about what can happen next because I have been blessed with a beautiful life worth living and I’m surrounded by my wonderful family who supports me in everything that I do!
Always look on the bright side, I promise there always is one!
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