Saturday, July 25, 2009

UPDATE: Running for My Life

I wanted to re post this blog because this last week I was named a finalist for the Nature Made: Fuel Your Greatness contest. I have been put in a great position to spread awareness for Cystic Fibrosis and I look forward to sharing my story with others.

Here's April's post:

**I recently submitted the following post to a contest being held by the company Nature Made. They were looking for stories about overcoming hardship, helping others, or making a difference in the world. I probably don't qualify, but I thought I'd give it a shot**

Two months ago I came to a fork in my life’s road. I had a choice to make: Continue on my current path, watch my lung function plummet, and die; or make a drastic change to take my life back.

Spending fifty days in the hospital can have many affects on a person. For me, it meant a total reevaluation of my life. I knew that I was going to have to make a change, and I knew that it would have to happen immediately.

I was born in 1980 with Cystic Fibrosis, a chronic illness that is the number one genetic killer of children today. When I was diagnosed at 6-months old, my mother was told my life expectancy was 19 years. This meant I shouldn't plan on going to college, I shouldn’t expect to have a wife and kids, and I certainly shouldn’t count on living an “ordinary” life. She took that to only mean one thing: Raise me to live an “extraordinary” life.

I began living life at full capacity. I played sports in high school, obtained a college degree, and devoted much of my time to be a blessing to others. In a sense, I felt I needed to pack 90 years of living into 19. I figured the more life I could squeeze into the time I had, the better.
This meant pouring my time into activities that I found most rewarding. I began working with various non-profit organizations and trying to be a help to those in need. Over the course of a few years, I co-founded a non-profit clothing and jewelry line that donates its proceeds to various children’s charities; established a not-for-profit coffee shop at a local homeless shelter; and worked hard to raise money and spread awareness for the Cystic Fibrosis Foundation.

My life, however, was turned upside down at the start of 2009. I began coughing up blood; enough of it to send me straight to the Intensive Care Unit for a week, and hold me in the hospital for an additional 40 days. My doctors and nurses were dumb-founded with my drastic decline. My lung function was low enough to put me on the transplant list, and I was unable to get enough oxygen into my system without the aid of a machine. My doctors became visibly concerned after I had been in the hospital for nearly fifty days, and had not yet reached my typical lung function. The doctors said there was not much more they could do. I began to realize that I was at an impasse. As a 29-year-old CFer, 10 years past my expiration date, I needed to take my life into my own hands.

From the moment I exited the hospital doors, I was on a mission. I began a strict routine which consisted of revamping my diet, exercise and treatments. I started excising daily, both lifting weights and running. As for my treatments, I committed to being more faithful with doing them than ever, ensuring that I do four, thirty minute treatments a day. And my diet began consisting of six, smaller, more nutritious meals, and adding several supplements and multivitamins to my daily pill schedule. I wanted to put my body in the best position to succeed.

In the 7 weeks since my release, I have logged more than 150 miles on my legs and 60 hours in the gym. It has paid off. I recently had my lung function re-tested and my lungs are now at over 75% capacity. That’s an increase of over 40% in 2 months! I feel better than I have for a long time, and I’m finally getting my life back.

The most incredible part of my transformation, however, was the unexpected opportunity that stemmed from it. I started this journey to help myself. To help myself, so I could help others. What I didn’t foresee, however, was its immediate potential to help others. I began to blog about my journey on a Web site called And in 2 short months, I have attracted several other CFers and their families, who have commented that through my story, and watching my improvement, they have been motivated to take on my mission as well. They have committed to fighting their decline and prolonging their lives.

Friday, July 24, 2009

I Would Choose Cystic Fibrosis

DISCLAIMER: This is not the opinion of the Cystic Fibrosis community, it is simply one opinion by one CFer.

It's a question I get a lot actually and one I enjoy answering because it often shocks people. So what's the question? If you could be born again, with what you know today, would you choose NOT to have Cystic Fibrosis? Here's one man's answer:

Thursday, July 23, 2009

The Daily Battles of Cystic Fibrosis

Hey guys, thanks for your continued support! I wanted to encourage you to try and watch the videos all the way through. I know I can become long winded and I'll try to make them shorter, but it's tough to squeeze in everything I want to say. I'll work on it though! But again, thanks for watching the videos at all, I just don't want you guys to miss anything! Take a look around the blog and check out all of the new features. I'm trying to make it easier for you guys to spread the word about CF and get it in front of people. I have also added some features along the left hand side of the blog including popular posts, recent comments, and my PFT history. I hope you guys enjoy all of the new stuff and as always, thank you for your interaction, thoughts and prayers.

Wednesday, July 22, 2009

PICC Line Dressing Change

You'll have to excuse my armpit hair hanging out of my shirt (what's going on there!!!???) Here's a video demonstrating a typical PICC line dressing change. Not sure what a PICC line is? Click here.

Tuesday, July 21, 2009

Has It Been One Week in the Hospital Already??!!

One week down and who knows how many to go? Well, I do actually. If everything continues to go as planned, I know that just one more week is very doable. I took my PFT's (wondering what a PFT is? Click here) again today and they slightly derailed my plan...initially. Never thought that I could LOSE so much lung function my first week here!

Remember to check out my PFT video if you haven't already seen it!

Monday, July 20, 2009

This Isn't the Cystic Fibrosis of the 1980's

So you probably wouldn't think that I could draw a connection between the fight against CF and NASCAR...but I can my friend, and I will.

Here are some other blogs you should check out:

"New" Treatment for CFers

So we tried a new treatment the other day (out of pure boredom) and I thought I would share it with you guys. It actually got me to cough quite a bit. Not sure how long the vest would last though with all of the beating it took!

Sunday, July 19, 2009

It's All About The Mucus!!!

So I've been in the Hole now 5 full days and I've got to say that I'm doing pretty good. I was super sleepy all day today, but besides tasting soap with my coffee (didn't do a good job rinsing the mug), I had a great day overall.

I now would like to present to you a video blog about possibly the most important issue to CFers all over the world: Getting that icky sticky ooey gooey green stuff out of our lungs. It's all about the mucus baby!