Straws 4 Jens

(Originally published on 5/1/14 on cotaforjensh.com)

May is Cystic Fibrosis Awareness month. Many local Cystic Fibrosis Foundation chapters hold "Great Strides" walks and events this month to raise awareness and funds to help find a cure for CF. In honor of this, I thought I'd take a cue from one of our biggest fans, Emily Huff, who is training for a marathon in honor of Jens. On one of her runs, Emily ran part of the way while breathing through a straw to simulate how it feels for Jens to breathe.

I got a straw and headed out in our new neighborhood. At first, it was a little uncomfortable to hold the straw in my mouth. As I continued to walk, I found that I had no choice but to focus on my breathing. The straw was causing me to take shallower breaths as I went, so I had to come up with some sort of rhythm on my own.

The Monongahela River in our "backyard."

I probably walked a half mile in total. The most annoying part was all of my spit coming out of the straw. However, if you've been around Jens, you know that he too has a lot of sputum (spit/mucus) that he has to get out of his lungs at rest and especially with activity. 

The hardest part was the finale, climbing the 19 steps to the apartment. I walked up them close to my normal pace, but I found I was VERY light-headed and felt flushed when I got to the top. I came inside, breathing very heavily, and used Jens's pulse-oximeter to measure my oxygen saturation. Jens does this frequently, and when he gets below 90, he knows he must go on some oxygen to get his levels back above 93. 

You can see in the picture that my o2 saturation was 82. It took me a few minutes to recover to get it back into my normal high-90s. However, in those few minutes, my whole body was affected by the lack of oxygen I had. I felt lightheaded, my heart was beating faster, I was tired. 

These are all things Jens experiences on a daily basis doing everyday things like fixing a bowl of cereal, getting dressed, and definitely walking up the stairs to the apartment. 

In honor of CF Awareness and Jens, consider taking a walk or doing part of your exercise/work-out with a straw in your mouth. Don't be bashful! Rather, if someone asks, share Jens's story and help raise awareness. If you're brave enough, send us your picture & your story to put on the Facebook page. 

Together, we can stand with the Cystic Fibrosis Foundation and researchers are working hard to help CF stand for "Cure Found."

http://www.cff.org/aboutCFFoundation/NewsEvents/5-1-CF-Awareness-Month.cfm