Five years ago today, I was put in the hospital for the first time since I was five years old. I remember it like it was just yesterday. I hadn’t been doing my breathing treatments or taking my pills for a while, and my cough had become more persistent. For this reason, I was terrified of going to my yearly check-up at Cook Children’s hospital in Fort Worth, Texas. My family and I always tried to make it a fun trip filled with shopping and eating at all of my favorite restaurants. This time was no different.
We arrived at the CF clinic and waited just a few minutes before a nurse ushered my parents and I to the back to check my weight, temperature, oxygen levels, and do my pulmonary lung function test (PFT). My oxygen levels were good, but I had lost a few pounds. When I went with the pulmonary technician, I remember crossing my fingers, hoping for a good report.
During the test, they have a “birthday candle” simulator, where, when you perform the test, you try to blow out all of the birthday candles. I couldn’t do it. I tried three times, but to no avail. My heart skipped a beat as I realized that was the first time I hadn’t been able to blow out all of the candles. I sadly walked back to the exam room where my parents were waiting to hear how I did.
Soon, Dr. Dyson, the doctor I had grown to love because of the silly bow-ties he wore on a daily basis, walked in the room and greeted us with smile. He asked how I had been feeling and where my cough had come from. That’s when he told us of my PFT results. My baseline was normally around 105-107%, but that day, my numbers were about 63%. Ever since I could remember, my numbers had never been that low. I was shocked. I saw my mom’s jaw drop and tears roll down her cheeks. Dr. Dyson then told us that it looked like it was time for a CF tune-up. In other words, my first hospitalization since I was five. I couldn’t believe it. Immediately, I started crying. My mom hugged me tight as she and my dad talked to Dr. Dyson about when I would be admitted and for how long. I don’t remember leaving the clinic.
The next few hours were spent calling family members, including my little sister, and telling them the news. I would be at Cook Children’s for the next two weeks. I had to call my boss and tell her I couldn’t work, and we had to take me out of Frenship school district to transfer me to the Fort Worth school district because I had already missed too many days of class at Frenship. If I missed any more, I wouldn’t get credit for my classes. My parents took me to eat at Pappasito’s-my favorite restaurant, and then out shopping until it was time to go back to the hospital. It was decided that, since my parents and I had only packed for a one-night stay in Fort Worth, my dad would drive back to Lubbock to pack us all another suitcase and would bring Karli back with him.
The next day, I had been settled into my large, corner room and was waiting for my PICC line insertion. A Peripherally Inserted Central Catheter, or “PICC line,” is a thin, soft plastic tube — like an intravenous (IV) line — that allows you to receive medicines and fluids. A PICC line stays in place for as long as needed (for me, it was two weeks). A nurse places a PICC line into a large vein in your arm and guides the catheter up into the main vein near your heart where blood flows quickly. The PICC line allows you to receive the medicine faster than if it were just going through an IV, therefore, your body is able to react faster as well. The entire procedure to put the PICC line in takes about an hour, and you shouldn’t feel anything but a little pressure.
After my PICC line was inserted, my arm was bruised and it hurt for several days. But I remember what hurt the most was when certain medications would go into my blood stream and they were so painful. It hurt so bad that I couldn’t sleep and I couldn’t sit still. We eventually figured out that the medication had to be at room temp and not refrigerated before it could go through my PICC line.
Another thing about Cook Children’s is their amazing hospital food. I’m serious. I’m a huge fan of food, and they had a chef there that could make an amazing dish that I literally had almost every day for both lunch and dinner. It’s been too long that I can’t remember the name of it, but it was a pasta dish with spinach and alfredo sauce and it tasted like heaven with a million calories.
The best thing about having Cystic Fibrosis is my diet. It’s high calorie, high protein, high sodium, high fat-basically high everything (VERY anti-Registered Dietitian!). It’s awesome. So when I was in the hospital and I really wanted a 550 calorie double-chocolate chip frapp from the Starbucks in the lobby, I got one. My hairstylist (who is a family friend) heard from my grandmother that I was going to the hospital Starbucks at least once a day and she sent me a $50 gift card! I had absolutely no trouble using it up. I am convinced that Starbucks helped me to gain weight while I was in the hospital, and that is why I am a Starbucks addict to this very day (I even choose to substitute whole milk in any drink that I order just to make sure I get those extra calories).
I remember meeting a boy about my age that also had CF and was just a few rooms away from me. We met in one of the art classes that they were holding for the pediatrics floor. Of course, we were both wearing our masks so we weren’t contagious to one another. That’s probably one of the hardest things about CF-not being able to hug each other in fear of giving/getting bacteria that could lead to another life-threatening lung infection. We have to stay at least six feet away from one another, or at least be wearing a mask.
One day, my dad took me outside for a short walk in the prayer garden. It was a beautiful day. I remember the sun shining down on me that chilly December afternoon. People who passed by me stared because of the IV pole that never left my side, but I didn’t care because I was actually outside of the hospital for once-away from death and sickness and sadness.
My sister Karli finally got to join me. She never said much to me about me being sick, and she never really has. Sometimes I have wondered if it ever bothered her, or if she ever had questions, but we don’t talk about it much. It doesn’t matter anyway, because I know she’s always there for me no matter what. We had a lot of fun playing games, eating snacks, and watching movies together in my hospital room.
Unfortunately for my family and I, we spent New Year’s eve in the hospital as well. My family bought decorations, party hats, and even sparkling grape juice to celebrate together that night. I don’t remember the last couple of hours of the year 2008 or the first few hours of 2009 because I fell asleep. I was much too tired to have a party!
During those two weeks in Fort Worth, I had more visitors than I had anticipated. It was hard being five hours away from my family and friends, but everyone who cared about me made sure to make me feel loved! I received dozens of cards, vases of flowers, several gift baskets, and even a few teddy bears. People were praying for me. My preacher at the time and his family came and prayed over me. People from church came to visit me. Family came and stayed with me and made sure I was comfortable. I will never wonder if I am loved, because so many have shown me that I am.
Something that is interesting about that time in the hospital is that it made me make a promise to myself that I would start taking care of my body. I knew I wanted to live a long and happy life. I knew I wanted to grow up, get married, and eventually start a family. I told myself that I would do whatever it took to reach my goals. But you know what? I didn’t. I got home from the hospital and I started doing my treatments again, but just a few months later, I was back to not caring. I would tell myself, “I don’t have time, I’ll do it later,” but I wouldn’t.
You may be thinking that was a pretty stupid decision. Well, you’re right. It was. I struggle with making stupid decisions like that on a daily basis. It probably doesn’t make sense to you. All I have to do is do a couple of breathing treatments and take five minutes to pop some pills down my throat, right? Well, yea. What’s stopping me? I have no clue. Maybe I just don’t have enough discipline some days. Sometimes I don’t have any will-power. Sometimes I just want to be normal. I don’t want to focus on my health.
It’s still hard on me to this day. I struggle. I fight myself. I fight Satan. I fight my parents. I’m a fighter! I fight to find the time to sit down and do my hour-long treatments. I fight to wake up just an extra hour earlier, or maybe stay awake an extra hour so I can make sure that I can breathe through the night so I get a good night’s sleep. I fight to not hit that snooze button literally every five minutes. Some days I win, some days I lose. But I think I’ll take winning some days over not winning any days at all. I’m making progress. It’s slow progress, but it’s definitely progress!