What up followers! Well I had my clinic appt. today and sadly the news I got was not what I was expecting. My FEV1 was 59%. 3 months ago I had my very confusing bout with my PFT's when I was feeling really crummy, they were at 62%. After 2 weeks of IV antibiotics, usually I would see a jump of 7-8%. At that time, I saw a drop of 2%. Now this time after 3 months of working out, not missing any treatments (I never do anyway) and lots of running, they were 59%. Needless to say I was very confused by this. I spent the drive home and some of the evening mad and upset at these results, as I'm sure most of you reading this with CF can understand. My frustration got the best of me at the time. I wasn't so much upset at the number or the fact that I will obviously have to add more exercise and will be adding hypertonic saline to my mix of medications. That's going to be my life with CF, adding meds and adding to my treatments as I get older and the disease progresses. I've accepted that fact. At the moment all I was thinking was "Where am I going to add time in my day to get this done?"
Some CFers out there are lucky enough to work from home. I'm hoping someday God will open a door like that in our lives, but as of right now, I work 40 hours a week. It seems as though there is always something going on in our lives. Almost every evening there's something competing with my treatment and exercise time. That's life though, there will always be something going on. My dad always had this saying growing up that still rings in my ears, "Son, you have time where you make time." As much as I hate to admit it, this is true.
I also learned today that I don't really know how to respond to the question "How do you feel?" I know that may sound funny, but they always ask when my numbers are down, "Well, how do you feel?" I always say fine, because for the most part I always do feel fine. I've come to realize I think that my definition of how I feel and the CF team's are different. When I think of how I feel, I am thinking in terms of at the moment. Do I have a stuffy, runny nose, sinus congestion, chest cold, coughing all night. That is my definition, however I believe their definition when asking how I feel is how has your mucous been? Thick, more of it, more color to it? Do you feel run down, tired a lot? Have any other CFers run into this? I was talking to my mom on my way home from clinic today and she was asking me these questions. I told my team I have had some increase in sputum production and it seems to be quite thicker and more green as opposed to the usual pale yellow color. But when I said I feel "fine" they said there's nothing to worry about then and we shouldn't do anything. Probably just had an off day or something.
I guess I need to change my definition of how I feel in my mind so I can relay what's going on with my health more clearly. I also think it comes from this deeper desire to not want to seem whiny or weak. I don't like to admit defeat or admit that I don't feel good even when I don't. I'd rather hide it and try to get better on my own by doing more treatments and intensifying the things I do to stay healthy. This obviously is a downfall of mine. Anybody else relate? I'm learning to get over this and call the clinic when I feel crummy instead of waiting 2 weeks til I'm really sick and then call. I guess that's part of being a man and wanting to feel tough and manly. :)
Lastly, I did get a bit of good news today! They discovered what my other gene mutation was. Up until this point, my chart always had one listed as Delta F508 (the most common CF gene), and the other unknown. I had some genetic testing done, and it came back that I have 2 Delta F508 genes. The team was unsure of how the other hospitals could have missed this, but the last time I had been tested was in 1989. It's good to finally know what my gene mutations are. Hopefully within a year or so they expect to see some drugs coming down the pipeline for DF508 CFers. Until then, it's time to GET MOVING! Keep running, keep knocking out treatments every day, and as Tony Horton says on P90X, keep pushing play! For all you CFers out there, keep at it!