(Antonela in Croatia, From Instagram: @NellaBellaX3)
There are so many inspiring humans on the planet and if you take 5 minutes to think about it, you will probably be able to think of a couple people. I found myself recently being so inspired by women in my life, whether it be in the real world, or through social media. There is nothing as amazing as connecting with other women and being able to listen to their stories. There are heroes all around us and I want to be able to share the stories of the women that inspire me!
First up is a lady who is very dear to me. I met Antonela in 2019 right after I returned from thru-hiking the Appalachian Trail. Her and I became fast friends. Her story is one that inspires me everyday to live life to the absolute fullest. Life is not always a guarantee.
I want to make this series a written interview and do not want to give too much away. I would rather let her tell her story in her own words.
Please introduce yourself.
My name is Antonela Kasic, I am 25 and I am just trying to find my niche in this crazy world while battling a chronic illness.
Tell me WHO YOU ARE in 3 words.
Fearless
Resilient
Passionate
Now tell me a little bit more about who you are.
I am 25 years old and living in Zagreb, Croatia. I was born in Metkovic Croatia on June 15,1996 (Gemini) however, a year and a half into my life I got extremely sick and a move to Pittsburgh, PA was my chance for a healthy life. I lived there for 23 years until last summer I made a drastic decision to pick up my life and move back for a chance at a life I envisioned in my head.
I have a four month old english settler named Moe who I never imagined I would love this much. He is my absolute pride and joy even when he chews up all my underwear. In our spare time you can find us taking time to ourselves from the busy hectic world we live in, reading, enjoying a cup of tea in a local coffee shop, watching SVU, and long walks around the town.
Tell me a little about what caused you to need a transplant when you were a child.
I was diagnosed with a volvulas of my small bowel resulting in gangrene. Unfortunately, it was discovered to late and all by the first 15 cm of my small intestine needed to be removed in a emergency surgery. I was only given 3 days to live past the initial surgery.
The fancy term for my diagnosis now is Short Bowel Syndrome related to gangrene of intestinal volvulus.
Please tell me more details about your transplant.
I do not have enough fingers and toes to count all of my surgeries.
My first intestinal transplant was 6 years after being listed on December 18,2005. I was nine at the time. It was the scariest day of my life as I had no idea what the world would hold before me. I was clueless. I kissed my parents goodbye, hugged my brother extra tight, and squeeze my stuffed dog so tight that I stopped breathing for a second. I was getting wheeled into a OR with a smiley face on my stomach drawn by one of my nurses saying, "Take care of me," and the idea that life was going to be different.
My transplant did change my life. It will be a day that I will forever celebrate and a day that will change my outlook on life and will shape me to the person I am.
Unfortunately the transplant only took for 5 months and I developed post transplant lympothnic disorder (a rare type of cancer) that put me in to sever rejection and the organ needed to be removed. We will never know if because of those 5 months I got to live the extra years that I do, or if those 5 months simply just shaped me to a person I may have never been. However, it is my BIGGEST blessing.
My most recent surgery was open heart surgery in February of 2021 due to a clot that had taken over my right atrium (the upper chamber of my heart). The words, "You need emergency heart surgery," gave life a new meaning because this time I was alone, in a new country, no parents around, nothing just me. I had moved back to Croatia in late 2020, and it was the first time in my life where I was alone in a new place. I knew that it was only up to me and how badly I wanted to see the days to come.
After the initial transplant tell me about the challenges you faced from a medical standpoint.
After my initial transplant I developed an autoimmune disease that has very much so become the number one focus of my treatment plans. The disease is unknown but mostly categorized as Ankylosing Spondylitis (an autoimmune disease that causes inflammation).
My body basically decides to swell up and initate a reaction believing that it is being attacked even when it is not. The swelling can get so extreme that I am not able to make fists, walk from my knees swelling, my hips hurting, etc. However, those would be symptoms of a flare up as they only happen when illness is present.
However, everyday I battle with extreme chronic pain due to the lack of treatment I received for years, bones becoming fraile, etc. basically a cause and effect reaction to the treatments.
Antonela was told that with her medical challenges, living into her 20's would be unexpected.
With the life span that was expected and the fact that you have outlived what many thought you would, how do you live each day?
I live each and everyday fearlessly. I know that my chances for tomorrow could be taken away faster than someone else's and because of that I do what I feel is best for me in that moment in time.
May it be that I enjoy my favorite food that day, I shouldn't eat, or take a spontaneous trip. I learned that life is so short and why should we be scared to live if death is always there. It's just unknown when it will happen.
How do you stay happy? Where do you find joy?
Lets be honest. I have my days. I take those days to just be mopey, take time away from the world , and recharge my head. However, when I do have mopey days I write down the simple things that make me happy: sunflowers, soft blankets, the beach, candles, hugs from my dad etc.
There has been days where I wanted to throw my hands in the air and scream I give up but as I grew up I realized that there are others that look to me as a role model and being someone's role model/light when it seems like only darkness, is the world's greatest feeling..
Please tell me about your challenges from a social standpoint.
Socially I like to live the most normal life that is possible. I receive IV TPN/hydration through a central line 5 days a week and sometimes all 7 depending on how I feel. My port is very visible and as confident as I am about it I struggle to hide it because I want to go on a date just like everyone else without automatically getting questioned.
Weight is a huge struggle for me due to the absorption but also because I tend to go through phases of losing the desire to eat because I do not crave it or find any interest in it. I eat a vegetarian diet as it suits me the best both stomach wise but because I just prefer it. When running low on proteins I'll make shakes or mix more of a protein powder into my recipes.However, I do have a cheat meal of greasy fries and some cheese to feel normal.
My scars, I never hide especially the one I just got from heart surgery. Just how people get tattoos I have scars that share stories too. I look at them as a symbol of something that I not only survived, but that no one else on the earth will have one identical to mine.
Hospitalization has become harder and harder as I have gotten older due to holding a full time job, managing all my appointments, etc. However - my mom always used to tell me that it was my way of my body just telling me to slow down, breath, and relax. So when I am hospitalized I take that time truly to myself. I work on my pain management, treatment plans, etc. It is a time to regroup and gather everything I wanted to do and just remind myself that I am only one person. I may be fearless but im not invincible.
What does healthy mean to you?
Healthy means that I am able to wake up everyday and live my life the fullest. Maybe it means I need a extra bag of fluids or a extra tylenol to not be in pain but I am able to do what I want.
Thank you so much to my dear friend Antonela for taking the time to share her story with me. When I met Antonela, she was a vivacious and hilarious woman. I had no idea of her medical challenges. As we grew closer and she shared her story with me, I was able to see why she lived the way she did. Everyday is a gift and Antonela is never going to take one for granted.
Please feel free to follow along Antonela on instagram @NellaBellax3