Wednesday, November 11, 2009
Down, but NEVER Out!
I just ended a cycle of TOBI. Want to guess what my PFT numbers were after my last cycle? If you guessed almost identical to what they are now, you'd be correct. When I blew my PFTs out of the water last month, I was on my off month of TOBI. So what does this mean? Well, one of two things: it's either pure coincidence or TOBI bothers my lungs while it's in there killing the bugs. I'm going to have to go with what's behind door number two Pat! I always feel a little "off" during my TOBI months. I'm usually achy, have hot flashes and generally feel more tired. It also probably didn't help my numbers that I was traveling so much this month and I hacked up some blood last week. So, that's the "bad" news.
Good news you ask? Like one of my Facebook friends said, this gives me the opportunity to "recalibrate and recalculate". I love that by the way Kelly! That's the first thing I thought when I blew those numbers (not in those exact words of course, those are yours). I was thinking, alright Ronnie, let's figure out what you did or didn't do this month that you did or didn't do the month before. Where do I start? Like I said, I was traveling a lot this month. Traveling means less consistent exercise, less consistent treatments and less consistent sleep. Well I'd say that's enough to send my lung function down 10% right there! Now it's up to me to make a new battle plan for this month and stick to it. No excuses!
I never take these "bumps in the road" lying down. If CF raises me some bad PFTs, I'll re-raise him with more exercise. If CF raises me with tiredness, I'll re-raise him all-in with increased treatments (Sorry for the poker analogies). Point is, I'm willing to do whatever I have to do to maintain and increase my lung function. I know that the investments I make now, will pay off in the future. For me this month, it may mean a hospital stay. If we're going to be honest, my doctor wanted me to get a bed in The Hole tonight. He's concerned with my drop in lung function + hemoptysis + other symptoms. Unfortunately, I can't go in tonight. I'm traveling to Dallas on Friday to be part of the CF Concert Series. If I get more sick by making that choice and pushing off a hospital stay, then it's on me. I'll have nobody to blame, including Mr. Cystic Fibrosis, but me. When it comes down to it, life is choices, and I am alone responsible for every one that I make...
...but yeah Dr. Martinez, I'll take that bed next week!
Labels:
CF,
Cystic Fibrosis,
Hemoptysis,
Hospital Stays,
No Excuses,
PFT
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Down, but NEVER Out!
2009-11-11T01:00:00-07:00
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CF|Cystic Fibrosis|Hemoptysis|Hospital Stays|No Excuses|PFT|
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deb · 789 weeks ago
i will agree with your tobi connection theory, though. my son gets a little whacked out on his tobi months, too.
have fun in dallas.
Kelly Geist · 789 weeks ago
k.
Amanda · 789 weeks ago
Cystic Gal · 788 weeks ago
You're the best judge of your own body. Maybe talk to the doc about increasing your inhaled steroids (inhalors like Combivent, Flovent) during your TOBI months. Love your blog as always, Cystic Gal
Leo · 788 weeks ago
Jessie · 788 weeks ago
Emily · 788 weeks ago
Anyways, I echo the feeling of having CFers to support you. It rocks, big time. So glad to have met you!! I love all that you write about and I love knowing we're all in this together. It's a huge blessing knowing the CF community is around you, CFers just 'get it' :)
Summer · 788 weeks ago