Hannah's Memoir 11th Grade English My CF

               Cystic fibrosis is an inherited disease that affects the lungs, pancreas, and many other organs; it is also a terminal illness. When I was 6 months old, I was diagnosed with cystic fibrosis or CF.

 

 My mom often told me stories about how they found out about my CF and how they handled it in the very beginning, she said that my skin tasted like salt and I had a thick cough that never went away, she said that my brother and my father would call her crazy and she was just being paranoid but when they took me to the doctor they did a sweat test that measures the amount of salt in your sweat, and it’s still used today.

 

On February 21, 2001 was the day they officially diagnosed me and I began my life long journey of hospital stays, IV’s, PICC lines (peripherally inserted central catheter), and walks to try and find a cure.

           

To me, having CF isn’t really a bad thing, it has helped to shape who I am today. Through it, I have met many great people; I have learned not to take things for granted because you never know when it’ll be taken from you. Every day, I go through life as if I didn’t have CF hanging over my shoulders or knowing that this disease very well could be what kills me but I’m determined to not let it be what kills me, I want to go out by something other than my disease because that’s not how someone should go.

 

As I got older, I started developing several other diseases. I was diagnosed with CF related diabetes, a liver disease, ADHD, depression, and it’s all part of my cystic fibrosis. CF can cause complications in other parts of your body, such as your pancreas and that’s why I developed diabetes it was harder to produce insulin through the thick mucus. There have been studies to show that most teenagers and young adults with a terminal illness will be diagnosed with depression because they know about what their disease is and its long term effects on their body.

 

My older brother, Tommy, doesn’t have cystic fibrosis. I look up to my brother as my role model because he’s 6 years older than me, tells me how it is, and he’s also helped shape me into the softball player that I am through his hard work and dedication to the sport. Tommy isn’t really affected by my CF anymore, most of my family isn’t. Eventually, the hospital stays, the doctor appointments, and the antibiotic deliveries just become part of our daily lives and it to him is like, “Oh, Hannah’s in the hospital again. Okay, I got to go to work, I’ll visit her later.” It’s not like it’s anything new when I’m in the hospital, but when I am, my family has to keep living as if I was still at home.

 

            The gene mutation of cystic fibrosis that I have is Delta F508 and I have two copies, one from each parent. The delta f508 mutation is the most common and deadly mutation.

 

            Cystic fibrosis has caused me to take many, many medications. I start my day by doing respiratory treatments that include a vest airway clearance machine and two inhaled medicines; I do this to help my lungs break up the thick mucus that has built up in them. Next, I take my medications, I take my antidepressant, my pancreatic enzymes, Prilosec for reflux, a medication for my adhd, migraine pills, my vitamins that I take because my body is unable to produce many vitamins that I need, and I take an antibiotic to help inflammation and infections in my lungs. I take pancreatic enzymes every time I eat because my body cannot break down and digest food on its own. After my medications, I eat and take insulin. My nights end the same way they started, respiratory treatments and more medication.

 

            When I was diagnosed in 2001, the average life expectancy of someone with CF was about 30, now it’s up to the late 30’s early 40’s. I know that cystic fibrosis is a deadly disease but I try not to think much of it, I still play softball, I go to school, I hang out with my friends, I can do everything everyone else can do but I have limits and stopping points in the amount of activity I can handle. Sometimes I can’t be as active as others.

 

            When people find out that I’ve been playing softball since I was 4, they ask, “How do your lungs put up with that?” I believe that since I’ve been playing for so long, my lungs got used to that certain amount of activity level and my CF never effects how I play.

 

            I have been hospitalized for almost half of my life. My lungs have collapsed and picked themselves back up. I’ve fought the same infection for 3 years. I’ve had many operations on my sinuses to clean them out to help me breathe. This is only the beginning of it, as I grow older, my lungs will grow weaker.

 

            My mother has always been by my side through it, she’s one of the strongest people I’ve ever met. To be able to have one kid that was 14 weeks premature and told he wouldn’t make it and to have him make it to 22 years was just the start, she didn’t know what was next but she was ready. My mother is a strong believer in Christ, she has always told me, “God gives these things to those who he believes can handle it, just like your CF.” Following my diagnosis, she started to work harder to raise money so that no one would have to go through that phone call that she went through.

 

            I hate cystic fibrosis and it probably hates me too. Every year, kids from Cincinnati and Northern Kentucky all come together at Sawyer Point to raise awareness for our disease. You never see commercials about Cystic fibrosis because what we have is rare, only around 70,000 people worldwide have it, this walk and our own advocacy is all we have to get the word spread and to get funds for scientific research to help us get rid of this disease.

 

            My junior year of high school has been my toughest year, I’ve been hospitalized twice for a lung infection, I had surgery to remove my gallbladder, I had a sinus surgery, and the most frightening of them has been when I had fallen and caused a fracture to my skull, three staples in the back of my head, a concussion, and my brain had bled a little. From my head injury, things have become more of a struggle than I wanted, I have trouble remembering basic things and things that I learned in school, I’ve had trouble with understanding basic concepts, and I’ve had problems with remembering to do everything that I need to do to take care of myself.

 

            I’m 16 years old and I have lived about half of my life. I do everything a normal teenager does but I have stopping points. I’ve had to have a strong responsibility since I was young that most don’t have. The simplest things bring me joy because I don’t know how much longer I have to enjoy those things. I don’t want CF to kill me or anyone else with it.