My Life with CF
Hi my name is Kristian and I was born in Hahn Germany because my dad is in the Air Force. When I was born my dad and I were transferred to Washington D.C at 6 months and diagnosed there while my mother was still in Germany.
By age 1, he finally was stationed in San Antonio where every 2 months we went on base to see Dr. Enscore. By age of 4, my parents split up and my mom, brother and I had moved to Arnett Ok, where my grandparents live and stayed there all through high school.
CF and complications
When I turned 10 I had gotten CF-related diabetes which sucked too. Two years later in 5th grade I had gotten viral encephalitis from west Nile and put in a medically induced coma for 5 days and now that is the reason I have my seizures. I had to start school all over again from first grade up to fifth. In grade seven, I had gotten to go my first prom and was still doing pretty good at the time, but later on the next year I was put on oxygen at night my pfts were running in the 50s.
Freshman year was when it all happened about early fall or beginning of basketball season. I was put on 5 liters of oxygen, 24/7, which sucked cause I was one the cheerleaders too. In September of 2009 my lungs were down to 32% and I couldn’t keep viruses off me or stay healthy. We didn’t know what to do and they said a transplant was the only thing to do to help me survive and at that time since I was so sick no transplant center wanted me.
My lung transplant experience
I was lucky that one my doctors went to school with one of the main transplant doctors in Houston at the time so they had medics fly me over and got me put on the list. I was in ICU for two weeks for RSV. When I got out we stayed at the RMH two blocks away from TCH. Every two weeks we would see the doctor and see where we were on list. On November 6, 2009 our buzzer had gone off saying we got a donor match.
I was excited and scared. But mostly excited to see what my life would end up like after this. My mom and dad were in the OR waiting room for 10 hours waiting to see how it went. Finally the 7th, I was put in ICU still on a ventilator and in my bubble too. The next day they took one my chest tubes out and said it looked good.
On the 11th they took out the last tube. And by the 13th I was back at RMH. Which I set the record of being out the quickest for lung transplant. Still every two weeks till February we would see the doctor. My brother and stepdad got to come down for Christmas that year in Houston with us.
Finally going home
In February I had finally gotten to go home but the bad thing was we had a bad blizzard too coming home. What really surprised me was how much my town loves. My parents woke me up right when we got into town to show me that the bank had their sign saying "welcome Kristian" and the courthouse had their sign saying "welcome home congratulations we missed you."
I finally got to finish my cheerleading right at state time which we made. I would go back every six months to make sure everything working right. Then see my CF doctor every two and they sent results down.
2013 I finally found my one. My the next year I had moved in and he would take me to my doctors everywhere. By 2014 it was my 5 year and everything was still good. One year later was transferred over from TCH to BAYLOR ST LUKES. 2016 I had gotten engaged in Florida and we took a family vacation to Universal Studios. 2017 both caught the flu and my sodium and potassium were messed up; I was put in the hospital for 9 days and now take sodium pills and watch how much water I drink.
Healthy and happy after my lung transplant
For the past two years, I have been healthy with no flu. Thank goodness and just in November was my 10-year lungversary and was at 100%. Now instead of going every six months all we have to do is go every year unless something bad happens. I had just gotten a new Dr that day. He asked when my transplant was and after I told him, he just said WOW.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?