Today I went in for an unscheduled clinic visit because I’ve been having seriously labored breathing.
There have been precious few times that I’ve actually been scared for my mortality because of my breathing (thinking about mortality and having physical feelings are so different). This week was one of them, as I’d climb into bed with my CPAP on, lay down on my side, and actually struggle for breath for a couple of very long minutes. I imagined that I looked like a fish out of water, gasping. My lungs hurt, or at least my ribs did, but it felt like my lungs.
I’ve also had episodes of a stabbing pain in my lower right ribcage, similar to a running stitch in the side about every other time I do my Vest. I have just had a general feeling that my lungs aren’t supple enough to expand or contract any more and that I’m wearing a very tight belt around my chest most of the time. Oh, yeah, and the whole blacking out episode – it’s all making me feel pretty nervous about where my health is at this point.
So, after doing PFTs, Bill said that my volume was up 10mL from last time, so even though I’d gained quite a bit of weight since my last visit, my FEV1 was up 1% to 35% now. What the heck?! I’m not saying that I’m not happy to have better PFTs, but I feel like they are going to think I’m crying wolf soon. I feel terrible, yet I’m still healthy.
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Yesterday was the great, national Outrun CF virtual run day! CFers, family, and friends everywhere signed up for a DIY outing wherever, however on the same day under the same name. It was really pretty cool to see people putting up their times and distances on Facebook throughout the day!
Since it’s been over 2 weeks of trying to get my new antibiotic to take care of my sinus bug that has also been causing some lung issues, running was not going to be an option. Beautiful came downstairs dressed to go out and I proceeded to cough my head off for the next 2 minutes as I put on my shoes. Yeah! Really ready to go out, eh? We had already decided to walk instead of run, but with these circumstances, any other ideas I had of being awesome went right out the window.
Being a beautiful March day in Tampa, it was well over 80 degrees, so even with the delightfully thin “I Outrun CF” shirt, by the time we walked up and down our street, I was sweating down my back and we called it a day. I’m over 30, not on O2, not on IVs, and I’m not on the transplant list, so walking up and down the street was still kicking CF’s butt.
This site is essentially all about kicking the crap out of cystic fibrosis in any way possible. First, it was my weight, which has given way to providing for my household during our increased medical expense period involving Beautiful’s allergies. With those expenses mostly out of the way, aside from two expensive and completely uncovered prescriptions, I am free to start gaining the weight back that I lost in the last two months. I’m not fretting about that weight loss, though, because I had the weight to lose this time. Any other time, this stress would have sent me spiraling down under 100lbs and back onto IVs. The weight is allowing me to fight back and stay healthy at 120-123lbs with relatively little effort in the eating department.
My next goal, aside from amassing a $50k savings account for a CF rainy day, is to get in shape by exercising. I don’t mean the namby-pamby exercising that we did earlier when I rode my bike around or we walked a mile. I’m talking about cardio. I haven’t done any cardio since I was 19, so that makes it… 12.5 years since that last stressed my heart and lungs. I grew up playing baseball, football, basketball during recess, track, and even played adult indoor soccer and softball after graduation and inter-mural flag football at USF during my sophomore year. Yeah, I was a sports stud… well, maybe not a stud, but I was in serious shape back then.
This week, starting on Monday, I loaded up the Free Step program on our Wii Fit Plus. Click to continue reading this article…
I made my Great Strides walk a race. I didn’t want anyone walking faster than me; after all, I am a superhero who goes by the name of Fatboy. The walk started at the entrance of the Lowry Park Zoo and led us around a mile or so loop around the exhibits. It was pretty easy stuff, but I had a hard time getting my team to keep up with the poor guy with 58% lung function. Can you tell I’ve got a competitive streak a mile wide and won’t take pity from anyone? I’ll cream you before you give me pity.
When we finished our first lap, Doogie Howser was standing at the Entrance/Exit thanking us for coming. We were done in 17 minutes, so there was no way we were going after waiting an hour for the walk to start… after a 40 minute drive to the zoo… after 5 months of raising funds. It’s supposed to be a 5k, after all… so we told him we were going around again until we hit 3.1 miles as he got on his radio/phone to find out why the heck I wanted to keep dragging my team around the zoo at 6:47 in the evening.
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Today I went in for an unscheduled clinic visit because I’ve been having seriously labored breathing.
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CF Fatboy is a small business owner flourishing in Tampa, FL. He and Beautiful have been married for 5 years and are doing everything they can to ensure they have a long life together.