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.

6 people had something to say...:

Cystic Gal said...

I love your essay. I want you to win.

I have been wondering, and I bet others do too (and maybe I should just poke around on your blog and figure it out).

How did you start to do such high impact cardio? Weren't you afraid you would drop dead?

Did you always have such a healthy weight or did you put it on after/ during your hospital stay? Do you take supplemental nutrition (tube feeds or ensures or anything like that?)

I want to do higher intensity cardio but I am afraid to, and at my pulmonary rehab it was the weakest weakest crappiest workout ever. (I think it was just a bad pulmonary rehab facility tho).

I also want to gain some weight on my bony ass. ;)

Love to you in the joint, (can't get enough of saying that!)


casey jones said...

Ha! Ha! Bro, this is AWESOME! You BETTER win!!!
Your my inspiration, and I know that without your website and posting daily that I wouldn't be at the point I'm at now! THANK YOU!!!!

I am currently doing a similar thing, it's called NO EXCUSES. After each blog, I will post everything I did that day as far as taking care of my CF.

Ronnie "Sickboy" Sharpe said...

Beth- I started it just by taking baby steps and increasing the intensity as my body got more comfortable with the workouts. I've been fortunate thus far to have decent enough oxygen sats to not worry about falling over dead :)

I've always had a healthy weight. I've been blessed in that I'm generally more in a position to lose weight than I am to gain it. The only supplemental nutrition I take are protein shakes daily.

The only real way to increase weight is to take in more calories than you are burning. SO if you start a high intensity workout, you need to focus on consuming as many calories as possible. I know that can be tough, but there are options out there.

Let me know if I can help you explore those options. You know I'd be happy to do so!


Denise said...

What a surprise, I'm crying. I am so happy I found your blog, Ronnie. You have such an incredible outlook and I look forward to following your journey for a very long time.

Beth said...

I hope you win it!
What really sparked my interest was your six meals a day. I would love to see what you eat in a day. I've always been curious as to how other CFers eat, and what they eat.

Christy said...

Ronnie, Love it - great job!!

I will have to use a version of your ordinary/extraordinary sentence in Mackenzie's room - love that and it's so true!