Great Results for Fellow Cyster on Denufosol

I asked Katie if I could share her encouraging blog from CysticLife about her experience with the clinical drug Denufosol. Check out what she had to say!!

So I headed to the Adult CF clinic at Northwestern/Children's Memorial today for my first study visit after starting on the actual drug in the second phase of the denufosol trial. I was so psyched . . . after hearing about the fantastic PFTs people were having on the drug . . .

So I blow and blow and blow (I have the "honor" of being one of the patients who can blow out ALL of the candles on the computer screen during my PFTs. I swear it's from years of blowing up balloons and practicing with so many PFTs and really has nothing to do with my lung capacity . . . ha ha. . .). And look at my numbers . . . and my FEV is exactly the same . . . and my FEV1 is 3 % predicted higher - which is actually within my "range."

My reaction: "You've got to be freakin' kidding me . . . .a whole year of blind study and now three times a day for the last three months with the real thing, and this is all I've got?" Granted, my PFTs are relatively normal, but still . . . I wanted some bang for my buck . . . The research team really didn't know how to respond . . .

So I saunter upstairs for my clinic appointment, my disappointment apparent . . .

And then my doctor comes in and shows me a chart of just my FEV1 in actual numbers, not percent predicted, for the last two years . . . it looked like this:

That big jump being today's FEV1 in actual numbers!!!! Two docs were confering as to why such a jump in actual numbers only calculated out to a 3% difference in predicted? They decided they were going to have to look into how predicted is calculated for this study . . . it's based on height, age, as well as "results" so they wondered if something in my combination was making the predicted "off." We may never know.

Needless to say, I was much happier seeing the actual numbers! Screw predicted . . .

So after about 30 minutes of saying denufosol was not worth my time, I changed my tune and will stay on it. It's obviously doing something good. If nothing else, it is containing any exacerbations . . . I've haven't been on oral antibiotics for about 9 months and I'm usually on Cipro 3-4 times a year for three weeks at a time.

It does irriate my throat -but my throat gets irritated if a piece of dust is in the air. The stuff I cough up is undeniably more slippery - so thinner. I still find it to be a pain for 15 minutes three times a day, and quite honestly, once I'm off study and am prescribed it for real, I'll likely do it twice a day more often than three times . . . I've even proposed that to be a study after it gets initial FDA approval. But the proof was in the numbers . . .so I'm a believer.

To be continued . . .

You can find the original post here.

Flash Me Friday - Stunning "Art"

This week's addition of Flash Me Friday call for pictures of our favorite piece of art. This was actually very easy to figure out considering we only have ONE piece of "art" in our entire house. I actually picked up this "stunning" piece at a CFF auction. Still not sure what it is, so if you recognize it, please fill me in :)

This is what you see immediately upon entering the guest room

Thank you to my aunt Mary for the dried up sticks coming up out of the pot over in the corner of the room!

A close-up of the who-knows-what

Are you interested in also participating? This brainchild of Jen over at The Groettum Family blog is going to be a weekly series in which we have to take a picture of her choosing without any cleaning up whatsoever. If you want in on the action, please visit here for the "rules".

Enzymes are No Challenge for this CF Toddler

I have to share this video of Radek, the star of the Radek Loves To Breathe blog, just owning the enzymes that were put down on his tray. If you'd like advice on how to get your toddler to take their enzymes you may want to reach out to Shane or Jamie (the Rockstar's parents) and see what tips they may have!!

What the _____?: July 14th, 2010

A few weeks ago we started a little contest on this blog in which I post a picture and whoever comes up with the most clever/funny/witty/etc caption gets put into a drawing for prizes at the end of the year. Still don't have everything figured out as of yet, but we do know a couple of things 1) There will be multiple prizes 2) I love the participation so far 3) If you think your submission is inappropriate for others to see, you can always email your answer directly to me at ronnie@cysticlife.org :) 4) I've literally LOLed both weeks so keep it coming!

This week's picture:

Alright, what do ya got!?!?

Last week's photo with the winning caption:

Winner: "This is NOT what I meant when I said we should spice up our love life!!"

submitted by Jen

2nd: "Saucy Squared"

submitted by Suzanne

3rd: "Aww Ronnie, all you brought on our honeymoon was A1? I think the stuff we need is called KY. Crap, now what???"

submitted by Kellie

tie

"Ronnie! I said I was sick of covering your meat with this crap!"

submitted by Sarah

We have quite the sexually charged crowd when it comes to making up these captions. Wonder what you'll come up with this week??

The Evidence of Blood Splatter

I don't really know how to say this without it sounding really strange, but if I turn up missing tonight and they suspect foul play, Mandi is not involved. Strange enough for you? Maybe I should take it from the top...

So this probably all started last Monday as Mandi and I recommitted to working our butts off in the gym. This includes morning walks, lifting weights at the gym, running and increasing our overall activity. This is good for us on two fronts: one, for obvious reasons, it's a good thing for my health and two, it gets us out of the house in which we seem to be in all day. Not that I mind, since it's actually what I prefer, but I must admit, we can get a little bit of cabin fever after working out of the house every hour, of every day, of every week, of every month. We've actually found a little local coffee shop, called, wait for it, "The Coffee Shop" which Mandi LOVES to hang and work out of. It is definitely a cool place to get some stuff done, but obviously at 1.85 a cup, we can't make it a daily habit. So anyway, I'm getting a bit off track, so let me get focused again...

...and I'm back. Last week I had a bit of hemoptysis before my clinic appointment. My doctor and I weren't very concerned however cause I'm doing well symptom wise on all other fronts and was just starting my Cayston, so we figured, if there was a bug going on, the Cayston would kill it. Now fast forward a week or so after that appointment and I had another bout with hemoptysis. And then finally, let's bring it all of the way to tonight, another episode. What's a little strange is all of these episodes have happened while I've been standing straight up. You say, why is that strange? Well, because 9 out of 10 times I'll start coughing up blood while laying flat on my back and usually in the middle of the night. So, it's a little strange that these have come while either walking around, or like tonight, making my nightly vanilla latte. I assure you, I'm not overly concerned, it's just a bit strange.

There could be a very logical explanation however, actually, could be a couple of them. First, I really think my rib injury set me back a bit and may have led to the irritation that has caused the bleeds. I know at times, I'll take a deep breath and can actually feel my lung rubbing up against my ribs. Can that cause hemoptysis? I don't know, but I wouldn't bet against it. Here's the other and most likely scenario though, it's probably the exercise. We've been hitting cardio hard and that's made me open up parts and use lobes that probably haven't been worked like this for a while. Today in fact I absolutely went all out on the elliptical and haven't challenged myself like that physically for quite sometime. So, if I were a betting man, I'd blame it on the exercise. That's not to say anything is going to stop, but it will certainly change tomorrow. I'll have to back off just a bit and make sure everything is all healed up before I push it again.

This brings me back to my first statement, Mandi is not guilty! I say this because we are big "murder show" buffs. On our DVR, 90% of it is First 48, 48 Hour Mystery, Primetime Crime, Dateline, etc. On most of the shows, what dooms the husband or wife when their significant other turns up missing is microscopic blood spatter. We just got done watching one in which they convicted a husband that was totally and obviously innocent, so it got me thinking...If I turn up missing, the cops are going to find a ton of blood splatter all over our bathroom. You may even find some on her clothing because she was standing right next to me and rubbing my back as I was coughing my brains (or my lungs) out. So, if you're reading this, she didn't do it, she's completely innocent.

Mandi, if you're reading this, don't get any ideas just because I've given you an alibi :)

You want me to do WHAT??

**Do not eat before or during reading - you have been warned!!

This weekend was yet another CF-related first for me...bathroom scouting. Huh? You're thinking. Let me back up and start from the beginning.

Ronnie and I woke up a little late for church yesterday, and knowing that we were meeting some friends for lunch after, didn't eat breakfast, but did house a few cups of coffee. When we got to church, there were bagels, so we both happily devoured half a bagel to tide us over, but because we were eating on the fly, Ronnie ate his half sans pills. This combo (and who knows what else, maybe the pizza from Saturday night) resulted in Ronnie having a really upset stomach. As we were leaving church he was debating if he should go back and use the bathroom before trying to make the drive to meet our friends, and on top of that, his stomach was so upset he thought maybe he was going to have to call off lunch. Being the trooper that he is, however, he decided that he could hold it and that he could still hang out.

BAD IDEA!

By the time we arrived at the restaurant to meet our friends Ronnie had worked up a sweat clenching through the many waves of death. I know you know exactly what I'm talking about, so I won't say more! Another wave was hitting him as we pulled in the parking lot. He looked at me, sweat on his brow and looking a little tense and said, "Do you think this place has an ok bathroom?" Now let me explain, Ronnie's not usually bashful, but the restaurant is SUPER quaint and tiny, and if he can stink up 4/5 of our house on a good morning, he can certainly ruin most patrons' meals in a small restaurant. "I don't know" I responded. "Will you go look?" he asked, "If it's not, I'll drive somewhere else". I began wondering how this was going to go down. Our friends were inside. I knew if I went in, they'd see me, and I've have to say hi, but dart to the bathroom, which would require me outing Ronnie. "What do you want me to say??" "That I have to go to the bathroom and you have to scout the bathroom." DUH MANDI - obviously the man that still makes fart noises when he watches someone bend over wouldn't have a problem letting people know he was about to totally ruin this unsuspecting toilet!!

This wasn't a covert opp AT ALL. I ran in, gave the obligatory hugs, threw my purse down and said, "Ronnie's in the car and wants me to scout the bathroom to make sure it'll be a suitable environment..." AWKWARD! Luckily we were meeting with another CFer and her husband...so they get it.

Anywhooooo, just thought I'd sure that first. Needless to say, this is yet another lesson in never eating without enzymes!