Friday, January 7, 2011

Nothing but Notes - Denufosol, Pixel Award, AHCCCS

This week, it was announced that the drug from Inspire Pharmaceuticals, Denufosol, had failed. Hoping to achieve an increased FEV1 after a Phase 3 48 week trial, the increase in FEV1 ended up being negligible. This came as quite a shock because the Phase 2 study of the drug was hailed as a major success. I was personally surprised after speaking with multiple CFers about the drug and hearing that it was doing wonders for them, whether it was increased lung function, increased mucus production or just a "feeling better" response. I admit, I had a lot of hope for this drug and was shocked and saddened to hear the news. I'm left with more questions than answers on this one.

On the bright side, and completely unrelated, CysticLife won a website award (The Pixel Awards) for the People's Champ choice of Best Blog of 2010. That's quite a mouthful! Anyway, we're super happy about it and so thankful that we're able to get some more recognition for the CF community. Anytime that we can get people to hear the words Cystic Fibrosis is a victory for us. Get enough of those small victories and they'll really start to add up. If you haven't yet signed up for an account on, I would highly encourage you to do so. And, if you sign up before January 11th, you'll be eligible to win an iPad!

Locally, there is quite a storm brewing over the recent decision by the Arizona government to cut funding for transplants for people on AHCCCS. I know some of the people who are or will be affected by this personally, and I just can't wrap my head around this one. I'm all for tightening the budget, and I'm no math major, but I would bet my bottom dollar that cuts to the budget, that won't allow people to die, could be found. I mean, there are some people on the transplant list who have worked their whole lives, paid into the system, and when they need the system the most, it fails them. Cannot explain that one.

Thursday, January 6, 2011

Thankful Thursday - Martha Stewart on Steroids

We can't stress enough how important it is in our own lives to slow down when things seem to be getting "fast" and just think about the little things that we're thankful for. Many of you expressed a similar sentiment last week as 6 people joined forces with us and blogged about their own thankfulness. I have a little "Linky Tools" at the end of this post that you can use to join the party and link up your thankfulness post! Feel free to spread this around to anyone you know that may like to participate.

Mandi's List:

I’m thankful for a wonderful week (last week) with both my parents, brother and sister-in-law, and Ronnie in Whistler, Canada. We had such a wonderful time all together. We ended up skiing more than I thought we would (which ended up being fun) and dinners and breakfast in town were a blast. My favorite part was just relaxing by the fire between skiing and dinner. I was bummed, that my dad had to get back to work, so he headed back to Shanghai Monday morning. Not gonna lie, I shed a few a big baby!

I’m thankful that all of my diagnostic tests (for IVF) this week turned out well. Not only were the results good, but the tests weren’t all that bad. We did have one little scare, but it all ended up ok. I’ll write a long post about all the tests Monday, so stay tuned.

I’m thankful that my mom is a VERY talented woman. She was nice enough to offer to sew curtains for me and Chrissy (sister-in-law). And man is she good at this kind of stuff. She has a good eye for fabrics, she knows how to measure and calculate how much she’ll need (factoring in the repeat (new lingo I picked up...apparently that’s what you call the reoccurrence of the pattern in a fabric, and you have to factor it in when you’re making curtains), she’s great at knowing what kinds of curtains will look best in a space, AND she can actually produce the vision we’re going for. It’s really incredible actually. She’s like Martha Stewart on steroids! I’ll post pictures when we get all the curtains made.

I’m thankful that we’ve been able to get back into the swing of things after the holidays. God’s given us a renewed vigor for work, exercise and eating right. Oddly, I’m actually excited about the increased working out and eating better (I’m a former - from 0-18 years old - couch potato who loved me some junk food)!

I’m thankful to be starting a new year with my best friend!!

Ronnie's List:

I'm thankful that I was able to spend so much time with family during the holiday season. When getting married, you don't quite know how the ol' "split holidays" are going to happen, but fortunately, we were able to work it out again this year :) We spent Christmas Eve and Christmas morning with Mandi's family and then Christmas afternoon with mine. It worked out well and we're just so blessed to have two families that love up on us.

I'm thankful that so far, Mandi is normal. Let me rephrase that as those of you who know Mandi know that is a bold face lie; When it comes to reproduction, Mandi is normal thus far. We've had a battery of tests this week (which I believe Mandi will catch you up on on Monday) and so far, so good. It's looking like God made Mandi with a proper baby maker and we're just praying that things continue to check out.

I'm thankful that I got to ski for the first time and that I didn't kill someone. If you read the blog from a couple of days ago, you'll know that it wasn't the easiest thing I've done, but I'm glad that I finally got the hang of it. I just hate failing. Now, don't get me wrong, I fail all of the time by standard definition, but true failure to me is not lacing up the shoes and trying again. I was bound and determined to ski down that stupid mountain, and by the third day, that's exactly what I did :)

Wednesday, January 5, 2011

Changing it up a bit...

For the new year, Mandi and I have decided to change up our routine a bit. We'll still be going for daily walks, but we're going to try to commit to the gym 4 times a week plus running 4 times a week PLUS (and it's big for a reason) pay more attention to what we eat. Now I know the first thing many of you are thinking is "What? He needs to just eat everything in sight!", but for me, I'm blessed to actually be in a position to "diet". We're not talking the celery and water diet or anything crazy like that, we're just talking about focusing on more well balanced meals. I'd also like to eat smaller meals throughout the day instead of eating until my stomach explodes at dinner. I've gotten to the point where my clothes are actually uncomfortable at times.

Many years ago I was diagnosed with gastroparesis. I don't want to bore you with the text book definition, so let's just say that instead of digesting my food in 2-4 hours, it takes 4-8 (or something like that). I'll often look and feel pregnant after a meal and if I go into a coughing spree, the meal with often come out looking like it did when it went in. I'm hoping that smaller meals will not only help with this issue, but also help cut down on some of the bloating throughout the day.

Who am I kidding though? I also need to lose a little bit of my belly fat. I'm getting older. I'm slowing down. All of the fat on my body seems to be collecting at my belly. I want to change that. Sounds simple enough right? It should be, it's only science. Calories in, calories out. So while I'm eating smaller, well balanced meals, I'll also be making sure to be hitting up the gym and keeping up with the running. Calories in, calories out.

I'm also looking forward to seeing if I feel better overall by doing this. I've done it once before, but it didn't last very long and I forget how it actually made me feel. Hopefully this time I'll be more aware of it's affects and I can share it with all of you here. And of course, if any of you have any suggestions, I'm all ears!!

Tuesday, January 4, 2011

Going Home is NOT an Option

First off, I hope that everyone had an unbelievable holiday season and that the first few days of this new year have been nothing but splendid.

I wanted to circle back a bit and update those who have asked, about my most recent "death defying" experience. I am of course talking about my ski trip in Whistler, Canada that I was able to enjoy with my beautiful wife and my ever so lovely in-laws. If you need a refresher on the first day of my trip, please click here. If you want to skip the refresher and just hear the spark notes, here they are:

- Put on skis.
- Went down hill.
- Tried to stop.
- Veered off to the right.
- Almost hit a tree.
- Lost ski in 4 feet of snow.
- Back on feet.
- Fell another 462 times.
- Out of energy.
- Scared of killing myself or others.
- Clicked off skis.
- Walked a mile down the mountain.

That should clear it up. Needless to say, the first day of skiing didn't go as planned and I was very disappointed with the results. I had made it abundantly clear that I was no where near done skiing, I was just done for that day. It got to the point where I felt like a complete liability on the hill and a danger to myself and others...certainly not the best feeling in the world. Not to be deterred, after a good night of rest, I was back on the slopes the following morning. Not only was I back, but I was eager. As I've mentioned many times before on this blog, I'm a competitor. I don't care what it is. If there is a winner and a loser, I'm in. And although there was a clear loser (me) on that first day, I was bound and determined to make sure that there was a different loser (the mountain) the second day.

My goal heading up the hill was a simple one: Do better than I did the day before. I had set the bar so low, that simply staying upright on skis for more than 15 seconds was really all that I needed to do. After a little bit of practice and a lot of encouragement from Mandi, I was beating that stupid hill like a red headed step-child. PAUSE: Where in the heck did that saying come from? If anybody has any idea, please let me know. And I'm sorry to all the red headed step-children out there. I have no interest in beating you up. My biggest mistake the day before was biting off more than I could chew. I thought I would be able to put on the skis and just "get it". That was most definitely not the case.

I think this is a common pitfall in many areas of our lives though. We set out to do something, something that we haven't done before or for a really long time, we fail and then we click off our skis and go home. It would have been much smarter for me to start with the training hill from day one. Or start with trying to increase to 2 treatments a day before going for 4. Or just walking 3 times a week before trying to walk every day. You get the picture. We often have this "go big or go home" attitude, that, although I admire (and am often guilty of), can get us into real trouble. When we're trying to make a life change that is incredibly important to our health, "going home" isn't an option. We may not need to "go big" at first, but we definitely need to go. Just click on your skis and commit to doing the bunny hill before you try to tackle the black diamond.

So that's what I did. I was determined to be the best training hill skier on the slope. Sure, it was a little embarrassing at times skiing next to 3 year olds, but who knows what their story is; they could have been born in an igloo for all I know. Me on the other hand was born on the surface of the sun (Arizona) and had never worn a pair of skis in my life. Completing a full run down that training hill and turning back and forth while doing it, was nothing short of exhilarating. More important, fully committing to the training hill for the entire second day, put me in the position to tackle the same mountain that had defeated me just two days prior. In fact, I went back to that same spot where I lost my ski and started from there. All I could think about as I skied down that mountain was how far I had come. I went from being the defeated to the victor. From the guy walking a mile down the mountain with a bruised ego (and shins) to the guy carving that mountain with the very same skis I couldn't put on two days prior. I set out to do something and I did it. It wasn't without pain, disappointment and frustration sprinkled through out, but I guarantee you that those set backs made the victory that much sweeter.

So as we enter this new year, I encourage all of you to pick out the mountain that you're going to ski. It could be to be more faithful with exercise. Maybe it's getting in an extra treatment per day. It could be increasing your lung function. Whatever it is, pick it out and now go to the training hill. After you're comfortable with that and it feels like you could ski down it with your eyes closed, join me in skiing down the mountain. Don't forget to enjoy the ride and remember all of the hard work you put in to get where you are as you're coasting down the slope. You earned it.

I'll see all of you at the bottom of the mountain.

Side note: This was the 700th post on RSBR. Yippee!!

Monday, January 3, 2011

Time to Get "Un-comfortable"

Resolution (n): 1. The state or quality of being resolute; firm determination. 2. A resolving to do something. 3. A course of action determined or decided on.

I have to be honest, I kind of despise new year resolutions. I don't dislike the concept, I dislike what they have become. They have become something that people feel obligated to set. People generally hold to them for all of 48 hours (see comic on left for applicable joke), and then they fall back into the comfort, ease, and familiarity of their previous routine. However, if you look at the very definition of the word "resolution", it isn't a flash in the skillet behavior. A resolution is a course of action. It is a course. Not a detour. Once you set course, you stick to that course. What kind of course is it? It's a course of firm determination. Determination makes you stead-fast. Determination is a decided outcome. A new years resolution is to be set if you're planning to change paths and stick to that new path.

Ronnie and I have decided this year, to make a new years resolution. Our resolution is to make ourselves un-comfortable. "Excuse me?" You're thinking. Yeah, my thoughts first. Why would I want to be un-comfortable? I'm hyphenating an attempt to show that we don't so much want to be "uncomfortable", we just want to undo the comfortableness we are slipping into. You stay stagnant when you're comfortable, and therefore, we must make ourselves un-comfortable to grow.

So this year we're working to push our limits of comfort, in order to grow; improve. First, we are going to make ourselves un-comfortable with our workout schedule. We have gotten comfortable with just running 3-5 times a week. But running 3-5 times a week isn't doing much for my muscle mass (ok, it's doing a little, but I'm not happy with a little), and it's not doing enough for Ronnie's PFTs. Sure it's keeping them where they are and maybe giving him a few percentage points, but who's satisfied with just a few percentage points? Not us. If you don't know where the ceiling is, why stop with a few percentage points? We are going to get back into the gym 3-4 times a week, get cardio in 3-4 times a week, a start each day with an even longer walk. We've worked hard all of 2010 to get into shape, but now it's time to get into BETTER shape.

Second, we're shaping up our diets. Currently, candy sits in my food pyramid where carbs should be, and I'm pretty sure that's not a great thing (granted, I'm not a certified nutritionist, but I'm going with my gut...literally...on this one). We are going to spend more time, energy, and possibly money to eat more well-balanced meals. The goal of this is not so much weight loss, but overall health. Part of this is because we need better fuel if we're going to be working out more, and part of this is I want my body to have the proper nutrients while trying to get preggers, and (fingers crossed) while carrying a bun in the oven.

Third, we're going to work to make ourselves un-comfortable in our marriage. We going to work on keeping ourselves from getting comfortable. We want to enter each day with an appreciation for the love we have; instead of putting our feet on the floor first thing in the morning taking each other for granted. We want to continue to shower each other with love, adoration, and praise. We want to continue to put the other one first, like you do when you're first dating ("where do you want to go for dinner" "I don't care, where do you want to go" "No, you pick" "No, you pick" remember those days right?!) My goal is to be so on top of my game that Ronnie is forced to be un-comfortable; and I know that's Ronnie's goal as well.

So, what resolutions have you set? In what ways are you going to make yourself un-comfortable this year? I'm fired up for's going to be even better than 2010, and 2010 was a GREAT year!