As I am sitting at the edge of my bed reading over some run disney blogs a thought occurred to me. Accomplishing this Marathon in a year goal would change my life. When I left Disney and ended my college program early because I was sick I was pretty much devastated. That was the one moment in my life where I let my CF rip me away from an experience I had dreamed of for years. I will always look back at that moment and think there must have been more I could do to stay. I realize that was the moment my health just got away from me. I let Disney become the most important thing to me, and I left later then I should have because I was very sick by the time I made it back and into the doctors office. I go to the University of Michigan in Ann Arbor and my doctor is Richard Simon and he is so wonderful. I didn’t realize at the time what I had done to myself but looking back now I can see that if I had come back from Florida a week or two sooner my health today would probably be 100 times better.
I made my return from the land of Magic and my Pulmonary Function Test (PFT’s) were low, I mean mid 30’s which is down from my usual high 40’s and low 50’s. The doctor put my on IV antibiotics and I went home and took time off from working, school and I just relaxed. A week and a half went by and I saw no improvements so the doctor decided to switch some of the meds around and keep trying. I continued my IV antibiotics at home for another three weeks. I finally started feeling better, my attitude was more positive and I just had more energy I thought I was back to my baseline. I went back in for a check up and my PFT’s had done gone about 5%, which to me was horrible. I was mortified that there wasn’t more improvement, i always bounced right back after IV’s I just didn’t understand why i felt better but they were still so low. The doctor was happy that I felt well concerned about the PFT’s but decided that continuing IV’s at that point wouldn’t help the PFT’s improve, and the physical and emotional stress of IV’s would just have a reserve effect on me in the end.
I did pretty well for a couple weeks, but it wasn’t even a month before I was back down and sick again. I e-mailed my doctor and he wrote me a prescription for Cipro which is a standard CF Pneumonia pill, and I kept going. It was February when I was put back on IV Antibiotics, which is a fairly normal schedule for me every three months. The problem was I didn’t have any time to feel better. The IV’s came and went three weeks later and I didn’t see any improvement. My PFT’s were in the low 30’s and my energy level was shot. Unfortunately I haven’t felt any kind of recovery since then.
I’ve been losing weight which a tragic sign of sickness in the CF community and that combined with my energy levels scares me to death. I have been sick many times in the past, but I’ve never truly felt sick. I have my days of complaining and hating life just like everyone else, but i’ve never been scared of my CF before. I believed for the longest time that I didn’t have a can do attitude, i had a will do attitude and that it pushed through the obstacle that stood before me sick or not. I let my CF get the better of me and it is taking a lot of work to get that attitude back, and this goal is going to be a big part of that. I was so used to coasting ahead and now I am battling just to keep my place in line, I am determined to win. I am determined to be better.