Monday, November 17, 2014

Part 2 of my CF story

Part 2: Middle School and High School

As many of you know, cystic fibrosis is a progressive disease, meaning it gets worse over time. Therefore, it was to be expected that I would have more problems the older I got. In middle school, I started having more frequent lung infections. I did IV antibiotics much more regularly and began to do them once or twice a year. In 7th grade, I had first experience with CF that truly scared me. I had been on IV antibiotics for almost 5 weeks when I started running an extremely high fever and couldn't stop shaking from chills. My parents rushed me to the hospital, and I was admitted immediately. The doctors had no idea what was wrong with me, but I kept getting weaker and more exhausted. After what seemed like forever, they finally figured out that I was having a drug reaction to one of the medicines I was on. Once they stopped the medicine, I started healing. It was at that point that I realized CF isn't a joke. I could not control how CF affected my body, no matter how much I wanted to. I also became hyper aware of the fact that I am not invincible, and life is a precious gift from God. I adopted the idea that God has given me a certain number of days on this earth, and I must make the most of each one.  I began to speak regularly at cystic fibrosis events and learned how to use my CF story to impact others.

The rest of middle school passed without much health excitement. In high school, I continued to live my life, staying compliant to my treatments and therapies so that I could stay healthier longer. In 10th grade, however, I had my big surgery. The upper and middle lobe of my right lung showed infection in every scan I had done. A test also showed that that part of my lung was dead and no longer doing anything useful. So, my CF doctor, surgeon, parents, and I decided to go ahead with a lobectomy, or the removal of part of the lungs (for me, my upper and middle right lobe). I will never forget the moment I was wheeled into the operating room. I had said my goodbyes to my family, knowing full well that this was a higher risk surgery than my typical surgeries. I tried to hold back the tears as I cried out to God for protection and peace as well as steadiness for the surgeon. Up until the moment everything went black from the anesthesia, I was praying. Before I knew it, I was awake. Incredibly groggy and in a lot of pain, but I was awake. It was at that moment that God really woke me up to His presence. After my surgery, I actually began to trust the Lord with my life because my faith was put into action. In high school, I also had a port placed. During my 7th grade nightmare IV antibiotics course (the one I just told you about with the drug fever), I had also had problems getting a PICC line placed. A PICC line is like a central line, similar to an IV, but it stays in longer and goes from a vein in the arm to the heart. My veins were shot, and they were no longer cooperating when foreign objects entered my body. Just the thought of them trying to get a PICC line in my poor veins gives me chills. I started having to go under sedation to get the PICC lines placed because they couldn't access my veins when I was awake. As I began to need IVs more like twice a year instead of once a year, this became more of a problem. In the summer of 2009, I decided it was time to get a port placed. I had previously rejected getting a port because I didn't want to be any different than I already was. After even simple blood draws turned into hour long ordeals with multiple sticks and digs to find a vein, I gave in and got the port. My only regret is that I didn't get my port sooner. Yes, I have a bump sticking out of my chest, but it's tiny, and the port has made my life so much easier. With numbing cream as my friend, port accesses are relatively painless and significantly easier than having to be sedated every time I need IVs or spending hours attempting to get blood drawn. Senior year, I had another big health problem. I was diagnosed with mycobacterium abbesses, an extremely resistant bacteria that you can only treat through long term IVs. I was on IV antibiotics for 9 straight months without a single break. During that time, my stomach lost its tolerance for IV antibiotics, and I began to feel nauseous with heavy duty medicines. I took Zofan (an anti-nausea medicine) every day as often as I could take it. My port stayed in good use, constantly pumping medicine into my veins. Thankfully, by the time prom rolled around, my IVs had cut down to five times a week, so I got one night of freedom from the needle of my port access and the meds flowing through my body. There's no break from CF, let me tell you. Throughout high school, I had my fair share of surgeries, IV antibiotics, and health problems. I won't bore you with them all because I could go on for pages. Through it all, I trusted my God and relied on the support of my family to keep me going and give me hope. They will never fully comprehend how much they influenced my life, especially in the middle school and high school years. I have no doubt that God blessed me with such a wonderful family so that I could handle the burden of cystic fibrosis with grace and courage.

Stay tuned for part 3: The College Years and CF!

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