My name is Kevin Krivosik and I have Severe Hemophilia A. I am twenty-four years old and live in Elgin, Illinois. Currently, I’m in my second year of teaching band and orchestra to fifth grade students at two elementary schools. Becoming a music teacher was a life goal of mine from a young age, but without the confidence I gained from learning to self-infuse, I would not have been able to accomplish this goal. Here is my story.
Life at home was different for us than your “average American family.” My parents have been divorced ever since I can remember and it was difficult not seeing my dad a lot. My older brother and I both have hemophilia, and my brother is on the Autism Spectrum - great mix, right? My mom was a Neonatal Intensive Care Unit nurse for the longest time and worked part-time in order to take care of my brother and I. Luckily, with her being a nurse, infusions at home were easy because she could access a vein like a professional. Let me tell you, she was a professional! My dad knew how to infuse my brother and I as well.
When I was around seven, our hematologist decided that my brother and I should start prophylaxis. My parents tried their best to be consistent with prophy treatment, but since both of them were working single parents, it was a challenge. I was curious to learn about self-infusion so I could take the burden off of them and be in control of my own care.
Then around nine or ten, I went to hemophilia camp through the Hemophilia Foundation of Illinois. It was a great opportunity to run around and be a kid and also learn self-infusion in a safe environment with medical staff around. I remember the first time I hit the vein, I felt very accomplished and proud that I would be able to be more self-sufficient.
Fast forward about two months. I had been self-infusing here and there with help from my parents. I was at a family friend’s house and wanted to show off that I could self-infuse. My mom, family friend, and I sat at the kitchen table ready to rock and roll. I put the tourniquet on and was able to see the vein. I stuck myself and got some drawback, so I was feeling pretty confident. After a few seconds it was challenging to push the medicine through. Being a ten year old with little experience, I didn’t think anything of this and kept pushing factor. After about fifteen seconds, I felt horrible pain in the top of my hand and saw a bubble. I kid you not, I screamed in panic and pain and wanted everything to stop! My mom took the needle out, and gave me a huge hug as I cried, feeling terrified. She explained to me what infiltration was and that the bump was factor under my skin. It was nothing to worry about and would go away in a day or two.
After that incident, I never wanted anything to do with self-infusing again. I was terrified of sticking myself, and for the next seven years, my mom, hematologists, nurse practitioners, and my dad tried to convince me to attempt self-infusing again. They said my life would be way more independent, but I didn’t want to listen. I became a teenager who still had to rely on his parents to infuse him.
I remember sitting on my mom’s bed with her as a frustrated seventeen-year-old, soon-to-be high school senior. I was still terrified of the thought of self-infusion. What would happen if I infiltrated again? Will this just keep happening? What if I can’t hit the vein? As you can imagine, these thoughts and many more were running through my head. The thought of moving away to college kept itching at my brain. My mom said to me, “I guess I’ll have to move to college with you so I can give you factor. What would all your friends think?” We both laughed but I knew mom was frustrated, because she knew I was capable of self-infusing. My anxieties and fears were just getting in the way. So that day, with the help of my mom and some positive self-talk, I took the risk I had been afraid to take for seven years - and I hit the vein! The moment that I got drawback I felt a rush of relief and freedom. It was a very cleansing feeling, I knew that I was starting the journey into adulthood. Little did I know that I would soon feel comfortable moving away to college to pursue my dream of becoming a music teacher.
Throughout college, there were many struggles with hemophilia. Lots of bleeding episodes, issues ordering factor, and finding time to self-infuse with the busy schedule of a music education major. This included concert band rehearsals, marching band rehearsals, teaching observations, countless hours in the practice room, and don’t forget finding time to study for my academic courses. Luckily, I was able to navigate many of these challenges thanks to the independence given to me by self-infusion.
Self-infusing has helped me become the person who I am today and achieve many of my life goals. So, if anyone reading this is starting self-infusion and struggling, know that you are not alone! This is no small challenge to overcome. In fact, this was one of the hardest things I have had to do in my life. You will do it at some point, know that. Make sure you have tons of support from family and your doctors. If you mess up, just try again. You can do it; it is definitely worth it, and that’s a promise.