Part 3 of my CF story
In my last blog, I told you that my senior year of high school, I did IV antibiotics for 9 months straight. That 9 months happened to end right before I headed to college. However, within hours of my parents leaving me at college for the first time, I felt a pop in my lungs and started coughing up tissue upon tissue of blood. I had a lung embolization surgery my first Friday of school to try and keep the bleeding from happening again. What a way to start college, am I right? After life got back to normal after the surgery, I slowly began to grow accustomed to taking care of all my medical needs, but it was hard work. I had to figure out how to balance breathing treatments, school, meeting and making friends, social activities, finding a church, getting plugged into a church, and seeing my family. Honestly, I'm still figure out how to balance many of those things. As well, I had to figure out how and when to tell people about my cystic fibrosis. Since I had lived in one place from 3rd grade all the way through high school, I hadn't had much experience telling people about CF. After all, it seemed like everyone knew, and if they didn't, they found out soon enough through natural conversation or through my friends and family. At Baylor, hardly anyone knew about my CF, and it terrified me. I wanted so badly to make friends, so much so that I didn't want anything to mess up the friend making process, including my CF. I considered not telling anyone until I had made some solid friends, but I knew that could never work for many reasons. For one, I was in a single room. Normal freshmen didn't get single dorm rooms, especially since space was not easy to come by. I knew I couldn't hide the fact that something was "wrong" with me for long from my neighbors. Another reason I couldn't hide my CF is because of the lovely CF cough. You know the cough I'm talking about--the one that sounds like I'm an 80 year old chain smoker, characteristic of many CF patients. My cough gives away the less than perfect condition of my lungs. On top of that, I'm an extremely honest person, and I felt like I was hiding who I was when people I talked to on a regular basis didn't know about my "hidden life". I couldn't stand keeping my secret for long. Even though I knew I would have to tell people about my CF, I had no idea how to tell people or what to say. I eventually began to tell a few people my story, crying from nerves about their possible reactions throughout the first few times I told people. Many people were shocked, saying things like, "You don't look sick", and "Are you serious?" (I'll take that as a compliment, and yes, I'm serious). I got better about figuring out who, when, and what to tell, but it was a long, grueling process. Freshman year, I also experienced a time of pretty serious depression because of a number of factors that all occurred at once. If you didn't already know, a huge number of cystic fibrosis patients go through depression as they get older because there is so much crud to deal with on a regular basis. Life can get hard, especially when, with a disease like CF, you seem to never get a break. So, I was already more likely to go through depression. Then, the second semester of freshman year is a time that many college students go through feelings of anxiety or depression because nothing is new and exciting anymore. You realize you don't feel close to many people like you did when you lived at home (because deep friendship takes time to build, usually longer than just a semester). You begin to miss the comforts of home and your family more than you thought possible. The final straw for me occurred when I started a new medicine. January of my freshman year, I was down to 90 pounds, an extremely unhealthy weight, I know. My senior year of high school, I had started losing weight because the FDA had taken my enzymes off the market and I was having to use enzymes that didn't work as well for my body, and I was constantly nauseous because of IVs. Instead of gaining the freshman 15, I continued to lose weight in college and couldn't seem to stop. My GI doctor decided to start me on Reglan to see if it would help anything. Unfortunalty, Reglan also has serious neurological side effects. Within a short time of starting on Reglan, I was not feeling like myself at all. I wanted to be alone more than usual, I was going through the motions of life in a fog, and I felt so weighted down. I couldn't shake the feelings of lonliness and sorrow. Finally, my mom and I figured out what was going on, I stopped the Reglan immediately, and I saw a counselor for several weeks to discuss some issues that I hadn't talked to anyone related to my CF and the way it had negatively affected me. Freshman year taught me to let go of my pride and humble myself before God as well as others. I couldn't handle everything on my own, and I learned that the hard way.
In my last blog, I told you that my senior year of high school, I did IV antibiotics for 9 months straight. That 9 months happened to end right before I headed to college. However, within hours of my parents leaving me at college for the first time, I felt a pop in my lungs and started coughing up tissue upon tissue of blood. I had a lung embolization surgery my first Friday of school to try and keep the bleeding from happening again. What a way to start college, am I right? After life got back to normal after the surgery, I slowly began to grow accustomed to taking care of all my medical needs, but it was hard work. I had to figure out how to balance breathing treatments, school, meeting and making friends, social activities, finding a church, getting plugged into a church, and seeing my family. Honestly, I'm still figure out how to balance many of those things. As well, I had to figure out how and when to tell people about my cystic fibrosis. Since I had lived in one place from 3rd grade all the way through high school, I hadn't had much experience telling people about CF. After all, it seemed like everyone knew, and if they didn't, they found out soon enough through natural conversation or through my friends and family. At Baylor, hardly anyone knew about my CF, and it terrified me. I wanted so badly to make friends, so much so that I didn't want anything to mess up the friend making process, including my CF. I considered not telling anyone until I had made some solid friends, but I knew that could never work for many reasons. For one, I was in a single room. Normal freshmen didn't get single dorm rooms, especially since space was not easy to come by. I knew I couldn't hide the fact that something was "wrong" with me for long from my neighbors. Another reason I couldn't hide my CF is because of the lovely CF cough. You know the cough I'm talking about--the one that sounds like I'm an 80 year old chain smoker, characteristic of many CF patients. My cough gives away the less than perfect condition of my lungs. On top of that, I'm an extremely honest person, and I felt like I was hiding who I was when people I talked to on a regular basis didn't know about my "hidden life". I couldn't stand keeping my secret for long. Even though I knew I would have to tell people about my CF, I had no idea how to tell people or what to say. I eventually began to tell a few people my story, crying from nerves about their possible reactions throughout the first few times I told people. Many people were shocked, saying things like, "You don't look sick", and "Are you serious?" (I'll take that as a compliment, and yes, I'm serious). I got better about figuring out who, when, and what to tell, but it was a long, grueling process. Freshman year, I also experienced a time of pretty serious depression because of a number of factors that all occurred at once. If you didn't already know, a huge number of cystic fibrosis patients go through depression as they get older because there is so much crud to deal with on a regular basis. Life can get hard, especially when, with a disease like CF, you seem to never get a break. So, I was already more likely to go through depression. Then, the second semester of freshman year is a time that many college students go through feelings of anxiety or depression because nothing is new and exciting anymore. You realize you don't feel close to many people like you did when you lived at home (because deep friendship takes time to build, usually longer than just a semester). You begin to miss the comforts of home and your family more than you thought possible. The final straw for me occurred when I started a new medicine. January of my freshman year, I was down to 90 pounds, an extremely unhealthy weight, I know. My senior year of high school, I had started losing weight because the FDA had taken my enzymes off the market and I was having to use enzymes that didn't work as well for my body, and I was constantly nauseous because of IVs. Instead of gaining the freshman 15, I continued to lose weight in college and couldn't seem to stop. My GI doctor decided to start me on Reglan to see if it would help anything. Unfortunalty, Reglan also has serious neurological side effects. Within a short time of starting on Reglan, I was not feeling like myself at all. I wanted to be alone more than usual, I was going through the motions of life in a fog, and I felt so weighted down. I couldn't shake the feelings of lonliness and sorrow. Finally, my mom and I figured out what was going on, I stopped the Reglan immediately, and I saw a counselor for several weeks to discuss some issues that I hadn't talked to anyone related to my CF and the way it had negatively affected me. Freshman year taught me to let go of my pride and humble myself before God as well as others. I couldn't handle everything on my own, and I learned that the hard way.
I did IVs twice freshman year, like I done in the past. Sophomore year, though, I had to do IVs three times, including my first time to ever do them away from home. Freshman year, I had been able to schedule IVs around my breaks, but I couldn't do that sophomore year (or any year since). Thankfully, my mom, dad, and sister were all incredibly helpful and drove to Waco to assist me several times (they're seriously the best). Junior year, I had a bit of a health scare. The day I got home from Christmas break, I felt like a truck had run over me. I couldn't move from the couch, and I was having trouble breathing. Turns out I had gotten the flu--the 8th time in 9 years for me to get the flu, even though I've gotten the flu shot every year. I had already planned to start IVs that day, so I hooked up to my IVs, started on Tamiflu, and did nothing but sleep. Unfortunately, the flu left my lungs defenseless, and the flu turned into pneumonia. I was in the hospital for several days and started the new year in a hospital bed connected to oxygen and all sorts of monitors. My doctor had also put me on a new IV antibiotic, and although it helped with the pneumonia, it made me throw up every time a dose started going through my body. However, I was ready to go back to school the Friday before school started that Monday. Extremely weak, but ready. The summer between junior and senior year, I also had a bit of a health struggle. I had my second sinus surgery in July. The surgery went well, but waking up after the surgery did not go well. I had a reaction to the anesthesia, and when I started coming out of the anesthesia, my breathing was not in sync. My carbon dioxide level was through the rough, and the anesthesiologist had to put me back under. They gave me an antidote, and praise God, it worked. I woke up breathing normally but with a breathing tube still down because they didn't want to take the tube out and need to put it back in if I still couldn't breathe correctly. It took me a long time to fully recover and get back to normal. Now, I'm about to start IVs again. On my birthday, in fact.
That's the majority of my CF journey, minus several minor surgeries, "regular" IV antibiotics, consistent breathing treatments and pills. Praise be to God that I have hope for the dark times and peace for times of trouble! I have no doubt that I will continue to have health struggles in the future, but like I've said before, my health is not my identity. Yes, it is a part of who I am, and yes, it has shaped my thinking and my attitudes toward life, but I am more than a CF patient. I hope taking you through my CF journey has given you a glimpse into the life of one of the many CF patients around the world. It's not an easy journey, but it's a journey I will take one step at a time.
That's the majority of my CF journey, minus several minor surgeries, "regular" IV antibiotics, consistent breathing treatments and pills. Praise be to God that I have hope for the dark times and peace for times of trouble! I have no doubt that I will continue to have health struggles in the future, but like I've said before, my health is not my identity. Yes, it is a part of who I am, and yes, it has shaped my thinking and my attitudes toward life, but I am more than a CF patient. I hope taking you through my CF journey has given you a glimpse into the life of one of the many CF patients around the world. It's not an easy journey, but it's a journey I will take one step at a time.
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