Wednesday, November 11, 2009

Down, but NEVER Out!

So as many of you know already, I took my PFTs again yesterday. Would you like the good news or the "bad" news? I'll go ahead and give you the "bad" news first. My PFTs were down. They went from a FVC of 83% and an FEV1 of 68% to 73% and 60% respectively. Now, here's why I say "bad" news. I of course never ever like it when my numbers go down, but this can actually be explained.

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!

Comments (8)

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i love how you set the bar high for yourself... i would expect nothing less from you. you seem to have your head on straight and are looking at this clearly, without excuses.

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.
1 reply · active 789 weeks ago
I'm with you 100% Ronnie! I like that you are making a LIFE CHOICE - you're aware of the pros and cons to such a choice and will no doubt figure out ways to compensate. Enjoy the trip - have a good time - and as always, have some killer workouts!
k.
Sorry your PFTs went down. I went to college in Dallas. If you find some spare time (any time of the day), you need to hop over to Cafe Brazil on the service road of Hwy 75 (East side) between Lovers Ln and Mockingbird. Most amazing French toast ever... (I know you are a huge breakfast fan) Open 24/7 and also has a bottomless cup of gourmet coffee... man, now I am really craving Cafe Brazil :-P
I agree that the PFTs might be down because of inflammation while you're on TOBI. Really bad inflammation could be causing your bleeds too, depending on how much blood you're bringing up... I guess it's all down to what other symptoms you're having, if you're losing weight or feeling sick, etc.
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
that sucks, what a coincidence i had an appt. yesturday too, and my pfts were down significantly. seventies for me is alarming. Well TOBI for doesn't really make a physical difference to me, I really don't feel anything.BTW you have a great attitude towards -cf.
I know how ya feel, TOBI makes me feel "off" too, and though you may not have the problem, being male and all, TOBI increases my PMS and mood swings, along with the heat flashes and overall tired and foggy feeling! I hate TOBI months, and tend to push it off as long as possible. Jessie
Ronnie-- I completely have the same feeling on TOBI! Though I'm sure it does the job in killing my bugs, my numbers are ALWAYS down, I notice that I feel completely off. The biggest thing I notice is I have trouble sleeping at night, it makes me really jittery or something because when I lay down (Even if I don't do it before I go to sleep!) it makes me sleep very oddly and I rarely fall asleep quick. Plus, I definitely get the hot flashes.
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' :)
I just wanted to tell you THANK YOU so much for posting your "equipment". I have been looking for a breathing machine for years!! I am going to try to get the one you posted. I am really excited about the gauge. It seems so much more accurate than just the switch on and off ones. Also I ordered my baby bottle sterilizer from Target this week!! I do so well about everything the doctors tell me however washing my nebs often takes a backseat to other things. I know they can grow bacteria and cause infections. So I am super super super excited about getting the sterilizer!! Anything that can make life easier I am all for it!! Thank you so much for posting the info!! Love the blog! =)

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