Home Spirometers: A Useful Tool in Tracking CF Symptoms and Progress

Guest Blog By: Meranda Honaker

Over the last several months my health has continued to decline despite being compliant and diligent with my healthcare routine. In July I developed a fever during a trip to Boston to speak to a biotech company about my journey with cystic fibrosis. I developed a fever and by the end of my visit, I was unable to walk up steps without severe dyspnea. I was so exhausted from feeling sick I would return to my hotel room to lay in the bed for hours to rest. My chest pain and shortness of breath became so severe in the coming days that I could no longer take a deep breath. I checked my SpiroPd home spirometer which displayed a definite decline in my lung function. I immediately contacted my CF clinic to see my CF doctor. Initially, despite feeling bad, I assumed I was feeling poorly and decided not to rush to CF clinic. Sometimes I have a bad day or few bad days health wise and begin to improve on my own. Once I saw my lung function had declined I knew I needed to be seen in CF clinic rather than waiting it out.
Continue reading Home Spirometers: A Useful Tool in Tracking CF Symptoms and Progress

Big Air Jerry: Compliant with Cystic Fibrosis

Be inspired to be compliant. Watch this brief video to learn more.

Big Air Jerry is a video series created by the Boomer Esiason Foundation to educate young people living with cystic fibrosis. Continue reading Big Air Jerry: Compliant with Cystic Fibrosis

Cystic Fibrosis Step by Step: Building a Treatment Routine

In this video, Gunnar stresses the importance of building a routine in order to stay compliant with his treatments and remain healthy. He also reminds listeners to keep an open dialogue with their doctors and support teams at CF Clinics. Continue reading Cystic Fibrosis Step by Step: Building a Treatment Routine

OWN IT: Do People With Cystic Fibrosis Experience FOMO?

Full disclosure here; I’m writing this while doing my treatments. In fact, I just stuck a syringe into a vial of sterile water, drew some out and then injected it into vial containing powdered medicine. Continue reading OWN IT: Do People With Cystic Fibrosis Experience FOMO?

Making it Matter Ep. 24 – Dealing with Disease Progression

Julia and I take a question from my most recent Facebook Live on the Boomer Esiason Foundation page, which asks about the progression of cystic fibrosis and how we deal with it.

Since cystic fibrosis is a progressive disease, it can take an emotional Continue reading Making it Matter Ep. 24 – Dealing with Disease Progression

Strength and Fitness in CF Care with Will Schlucter

CF Podcast 163: Strength and Fitness in CF Care with Will Schlucter

In this podcast we meet Will Schlucter, a 26 year-old CF patient who owns his own gym, Will Power Strength and Conditioning. After years during his youth of taking breaks during athletics, Will decided, as an adult, to push Continue reading Strength and Fitness in CF Care with Will Schlucter

Up For Air is Available for Rent/Purchase

Up For Air, The Inspirational Award-winning Documentary Available for Rent/Purchase

We are excited to announce that the award-winning Up For Air documentary featuring BEF ambassador and 60-year-old pole-vaulting coach living with CF, Jerry Cahill, is now available to rent and purchase on Vimeo. Watch the full movie here:
https://vimeo.com/ondemand/upforair.

About Up For Air
The film, directed and produced by Artem Agafonov, was shot over a period of five years, highlighting the “lead by example” and “you cannot fail” attitude of Jerry Cahill as he overcomes the daily challenges of living with CF. Viewers will understand the importance of Jerry’s role as a coach and mentor to pole-vaulting athletes, as well as the sobering reality of Jerry’s daily medical regimen.

The documentary follows the steady decline of Jerry’s lung function, framing his body as a defective machine and pegging time as his ultimate antagonist. When Jerry’s lung capacity decreases to 19 percent, a double lung transplant becomes imminent.

Up For Air gives viewers a glimpse into Jerry’s journey as he transforms and vaults over the many obstacles of this next chapter of his life.

Learn more about Up For Air here.

Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance

As part of his 60th year, Jerry has Activated a “Living List,” and will Complete 60 Events this Year — This is 60:60

New York, June 27, 2016 – The Boomer Esiason Foundation (BEF) today celebrates the 60th birthday of Jerry Cahill, a BEF cystic fibrosis (CF) Ambassador and double lung transplant survivor, who proves that age is truly just a number and that success is possible with a strong commitment to your health. Within the last Continue reading Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance

Organizing all the CF “stuff”

Like many of our readers, I have an abundance of CF stuff.  Between IV supplies, inhaled medications, tubing for nebulizers, nebulizers for home and travel, neb cups, oral medications and diabetic supplies I feel like I live in a hospital.  And since organizing all of the “junk” we have can be overwhelming I decided to share what I do.  This does not mean that I think my system is great, perfect or Continue reading Organizing all the CF “stuff”

Making Exercise Fun

By Amy Braid

A while back I wrote about how much I dislike exercise yet I do it because I know I need to.  Well I am happy to report that I still don’t enjoy it!  HA!  In all seriousness, I really don’t enjoy it.  I still clock watch while on the treadmill to see if it is almost time to wrap it up, or check how much time is left on the show I am Continue reading Making Exercise Fun