More About Me

I was diagnosed with CF when I was 5. My brother was diagnosed when he was a few months old, so they tested my sister and I. I have CF; my sister doesn't. Before I was diagnosed, my mom said I looked like "a child from Ethiopia". I was super skinny and really pale. Once I started my CF meds, I grew a whole bunch really fast. I'm sure this time was really hard for my parents. I remember being told that the doctors asked my parents what they had done or what they had told me because having CF didn't seem to bother me at all. I came into the dr. office and said something to the effect of, "I have this thing, but it's too hard to say." All I knew was that I felt better.
God has blessed me with excellent health for most of my life. The first time I was hospitalized for CF was in 3rd grade for 2 weeks and then a week at home with the IV meds. I was admitted for 1 week in fifth grade and wasn't put in the hospital for CF again until the summer after my freshman year of college. Those two weeks were very hard for me. The last time I had been hospitalized for CF, I was probably 10. Now I was 18. Having CF never bothered me before. It was just a part of life. It was normal to me and really all that I remembered. Being hospitalized that summer really made CF more of a reality to me. My lung function was better after those two weeks, but not nearly what it had been before. After being out of the hospital for two weeks, my lung function was back down to what it had been before the hospital...about 45%. This scared me to death. I was used to my lung function being between 80 and 110%. I went back to college on an antibiotic, with myself and everyone I knew praying for a miracle. I saw the CF doctor in the state where I go to college every month for awhile. Each month, my lung function had gone up a little bit till it got to about 73% or so. Now, I worked like crazy to stay healthy that first semester back to school. I made sure I never missed my therapy and exercised between 3 and 5 days a week. While this helped, I'm sure that God played a much bigger role in my increasing lung function than I did. The dr. told me that what was happening wasn't normal. I should have just kept getting worse, not better. God had given us the miracle we prayed for! I can't think of a time that I have ever been more thankful.
My health stayed good throughout my sophomore and junior years of college. My lung function didn't go up any more, but it didn't really go down either. After I finished my junior year of college, I went home for the summer. My mom kept telling me that I was coughing like crazy and looked awful. Even my boss said that I was pale and that something didn't seem right. So, we moved my dr. appointment. I didn't want to go back in the hospital. I had been determined to stay out of the hospital for as long as I had when I was younger. I went to the dr. who informed me that my lung function was down again and it would be best for me to be admitted for two weeks so that I would be healthy for the rest of the summer. So into the hospital I went. My brother was also in the hospital at this time and this was the first time he had been in since he was a baby (he was 15 at the time!). Our hospital stays overlapped for a week, which was nice. It wasn't as boring knowing I could go hang out with my brother when I wanted to. It was also nice for my parents to have us both there at once, but by the time I got to go home they had been traveling back and forth about every other day for 3 weeks. The hospital we have to stay in is 2 hours away, so it was a lot of driving for them to come and see us. When I left the hospital, my lung function was better, and I discovered that I really did feel better. Whenever I get sick from CF, I really don't notice it. I don't seem to usually have the typical symptoms of a lung infection...tiredness, weight loss, etc.
I came back to school for the first semester of my senior year. I got a "cold" around the middle of the semester. When I went to see my CF dr. for a normal appointment, it had been about a week since I had this cold and thought that's all it was. However, soon afterwards, I began to get horrible sinus headaches basically every day and I was always congested. During Thanksgiving break, I mentioned it to my regular dr. and he had an X-ray done on my sinuses. It didn't really show anything, so when I came home for Christmas, he had a CAT scan done. This pretty much looked awful. There was barely any air moving through my sinuses at all!
What happened over Christmas break really turned out to be a God-thing. My mom moved our CF appointments from just before I was supposed to come back to school to the day after Christmas due to some bad weather. We went to the dr. that day not concerned about anything other than my sinuses. The dr. said that my sinus CAT scan didn't really look any worse that it would for anyone with CF, but that fact that I was having symptoms meant I was a good candidate for sinus surgery. It also turned out that my lung function was really low. Before using albuterol, it was in the 30%s, and afterward it was in the 50%s! The dr. told me I had a decision to make. There wasn't much time till I had to head back to school, but there was enough. I decided that it was best to take care of the problem then rather that spending the semester really sick. I was admitted that day and spent the next two weeks in the hospital. While in the hospital, I had that sinus surgery which has turned out to be a huge blessing! It's SO wonderful to be able to breathe through my nose and to smell things again! I left the hospital about 3 days before coming back to college. My lung function was a little better, but there wasn't a huge increase. I just went to my CF dr. a couple of weeks ago and my lung function is up to 70%!!!!!! Praise God! It hasn't been that high in quite some time. Hopefully it will stay that way for quite awhile. If my mom hadn't moved that appointment, there wouldn't have been enough time for me to be admitted at home. One of three things would have happened: I would have been hospitalized and missed the first part of school; I would have been hospitalized down here at college, or I would have spent the semester really sick. God definitely knew what He was doing!
Being in the hospital really taught me to trust God more. The first few nights I would lay in bed trying not to cry. I didn't know why this was happening or what the outcome would be. This certainly wasn't how I planned to spend half of my Christmas break. Other than having my wisdom teeth taken out, I had never had surgery before. This was all so unexpected. While it was hard, at the same time it wasn't, if that makes sense. I'm starting to get used to having PICC lines put in my arm (I have the scars to prove that I've had them!) and spending two weeks in the hospital. It's not something I like getting used to, but this is part of CF. God has blessed me greatly. I could be much more sick than I am.
Anyway, back to trust. This hospital stay really taught me to trust God. I didn't see this whole thing coming and I can't see the future. CF is unpredictable in the sense that you don't know when you're going to get sick or when you'll need a lung transplant, or when you'll die. Yes, there's a life expectancy, but you might live longer or you might not make it to that number. All I can really do is trust God. He's given me today. He knows what He's doing even though I can't always see it. I have absolutely no clue what the future holds for me and this disease, but He holds my future. He knows what will happen and He will be with me every step of the way. That gave me such comfort during those two weeks, and it still does.
The way I see it, there are two things that I can do. 1. Live in sorrow and depression and constant worry because of this disease. 2. Hand it over to God and trust Him. I choose to trust Him. I don't really know that I could live any other way. I think I'd go crazy trying to live with a disease that will kill me without trusting God.