| CF Celebrity Dinner February 11, 2006 |
| Christena speaking at celebrity dinner. Roses were given to her after she spoke. Speech is below. |
| In the last fifty years, science has allowed for many improvements and advances in the study of cystic fibrosis. From new medicines and treatments, to targeting the gene and becoming closer to a cure each day, science is helping to provide for a longer life, and a new found hope for cystic fibrosis patients. While a cure is not available, new methods for improving and extending the life of patients with cystic fibrosis, are arising each day. One treatment, while certainly not new but becoming increasingly common and more effective, is lung transplantation, having the affected lungs removed completely, and replaced with donor lungs. This method of treatment, is one I have become all to familiar with. June 12th of 2005 at 11:30 at night, my life changed drastically; I had gotten the call that my ‘perfect set of lungs’ were available. My mom, brother and myself left our apartment where we were living in and rushed to St Louis Children’s Hospital. My Dad and Grandma were able to arrive at the hospital, after traveling from Kentucky, only minutes before I was taken back for surgery. Over the next 9 hours, my life changed forever. No more oxygen to help me in my struggle to breathe, no more wheelchairs to get from place to place, no more treatments that consumed my day just to offer a few minutes of stability to my failing lungs. I wasn’t the least bit scared, and felt calm and almost surreal, which in talking to others, seems quite common. I woke up within an hour after surgery. The first thing I did was sign I love you to my parents; I knew this would assure them that I was okay. When nurses finally got me a pen and paper, I was asking questions and giving commands. I was off the ventilator after only two days, and off oxygen soon after. On the third day, I was walking the halls, only to be disappointed I wasn’t running them; I suppose you could say I had high expectations. I wasn’t scared or upset or depressed or even in pain, as some people get after surgery; motivation and determination filled my mind and all I could think of was getting out of there and starting my life. On the 11th day, after I had three days of high dose steroids to treat some rejection found in my lungs, I was released. My wheelchair that I remember so vividly being pushed in by my brother for the months prior to my transplant, and particularly the night I received the call, went home with my Dad, it was of no use to me anymore; I had legs, and lungs that could provide for them. The three months in St. Louis were without a doubt wonderful. My life was fresh and new; I felt wonderful, and looked wonderful too. I wasn’t grey or skinny or panting for air. I felt like doing something constantly; which was more reason to catch up on my most missed activity when I had been sick, shopping! It was great exercise; what is better than walking a huge mall for hours? And my physical therapist, whom I saw three days a week, loved that I was out doing something physical; it added to the conditioning I got by walking a mile each a day and lifting weights with her. The physical therapy visits and doctor visits kept us busy. We were at the hospital usually at least four days a week, going for clinic visits twice a week and therapy three times. My lung functions that had been a mere 16% before transplant went to 55% the first time I did them immediately following surgery. Doctors and nurses were ecstatic; things usually don’t increase so quickly. The first few weeks when I went to clinic, my pulmonary functions increased each time. And by two months post transplant, I was at 75%. When I got an infection in my blood stream just weeks before I was scheduled to return to Kentucky, things looked grim, and no one was for sure what the effects might have on me, provided I came through it at all. I was in the hospital for over two weeks; longer than my transplant hospitalization. My blood pressure plummeted, and then in attempts to remedy this problem, I was given fluids. When the fluids didn’t help, they only proceeded to give me more fluids, a total of seven liters. The next few days are quite hazy to me. I started to have organ failure, not of my lungs- they stayed in mint condition- but my kidneys took a huge hit. After a few days of terrible pains, discomforts and confusion, things started to turn around, and I was feeling better. My kidneys started to function again, although they never fully recovered and the experience left me with kidney damage. I was moved out of the ICU and put back in a regular room. My lungs were healthy, I was doing better, the worst was over, so we thought. No one realized that with all that fluid being put into me, and the kidney failure, the liquids would need a place to go. So when only a few days after being transported to a regular room, I began asking for oxygen and gasping for breath, we knew something wasn’t right. I was literally begging for oxygen and the amount I was on, was constantly on the rise. One morning after things were getting out of control, therapists, doctors and nurses flew in my room, bagging me so I would breathe as they raced my bed down the hall back to the ICU. I had pulmonary edema, fluid on the lungs. Things looked worse than before. I was put on extremely high pressure bi-pap, only because I had used bi-pap in the past, as opposed to the ventilator which I was able to avoid being put on. My surgeon told my mom that my lungs were in horrible condition; the fluid had damaged them, and he didn’t think they would ever fully recover. When I heard the news, and saw my pft’s a week later, after I had recovered, I was disheartened, sick even. I had spent the last two months of my life conditioning my body and lungs and working them with everything I had. I hadn’t missed any medicines or treatments or physical therapies; and my lung functions were at 58%, nearly the same as immediately after my transplant. Even with this news, I knew I had to press on. Maybe my lungs never would fully recover, but I could still work to improve them as best I could. After three weeks, the day before we moved back home to Kentucky, I was proud to waltz into my surgeon’s office and report lung functions of 80%. I always prove them wrong. It has been 8 months since my transplant. I am happy, healthy, and living. I have what some might consider ‘welcomed’ responsibility. I’m glad I can go to school each day and have energy to come home and go out with my brother or friends. I’m excited that at seventeen I am able to go to work, which most people may despise; but not me. I know a lot of people would be quick to say, Cystic Fibrosis doesn’t define them, or doesn’t account for the way they act or think, or the person they are. I would say just the opposite. Even though cystic fibrosis doesn’t affect my life the way it did before, I still have cystic fibrosis. Every part of my life with cystic fibrosis, the good and the bad, accounts for who I am, and defines the way I live. I have gained so much from this disease, other than infections and hospital stays. I learned to appreciate every aspect of life and every blessing granted. I know my life isn’t and never will be perfect. Transplant is not an easy road in the least, and I know things may become difficult at points. But I wouldn’t trade my life as a cystic fibrosis patient, or as a lung recipient, for anything, because that just wouldn’t be me. |