Feeling Disconnected

Just a little over a year ago I returned home from a seven month stay in Pittsburgh. We were there for a double lung transplant at UPMC Presbyterian Hospital. At the time my mind was so focused on recovery I had little else to think about. Each day I learned new things about life post transplant like what I could eat and couldn’t due to medication interactions, when to take my meds, how to interpret my lab work, etc. Everything was fresh and new and exciting. Continue reading Feeling Disconnected

CF Podcast 137: CF and Exercise with Low FEV’s – Liz Kaup

Lizz Kaup, 34 with CF, born and raised in California and currently living in Tecumseh, Oklahoma. Lizz was diagnosed at age 3 and is currently working as a senior social worker at a medium-secure juvenile facility and recently completed her program at East Central University. Continue reading CF Podcast 137: CF and Exercise with Low FEV’s – Liz Kaup

Smoky Days – Guest blog by Laura Mentch

Yesterday it rained. I’m happy for the change in weather though I will miss the warmth of the past months. Summer is fire season where I live and huge fires send clouds of smoke across the west. This year the smoke is from fires in Canada, Washington and California. Some years the fires are so Continue reading Smoky Days – Guest blog by Laura Mentch

Gunnar Esiason Launches New Blog

Our very own Gunnar Esiason launched a blog to share his story
of living with cystic fibrosis.

“I want to use this blog to share some of my experiences so that hopefully when you, whoever you Continue reading Gunnar Esiason Launches New Blog

Technology Helps Teens with Chronic Disease

Adolescents with chronic diseases (ACD), such as cystic fibrosis, gastrointestinal disorders (including Crohn’s disease) and Type 1 diabetes, often find the transition of managing their health care needs into adulthood to be challenging. Preparations for this transition are often clinic-based, Continue reading Technology Helps Teens with Chronic Disease

Podcast 133: Overcoming Obstacles and Coming Out with CF

“You can expect to live a pretty long lifespan. So don’t waste it. Have some goals. Find your passion. And pursue it.” https://www.youtube.com/watch?v=oOKcfvxnAs4

In this podcast, we meet Eric Hyman, a 36 year old who is living, breathing, and succeeding with Continue reading Podcast 133: Overcoming Obstacles and Coming Out with CF

Anatomy of an Excellent Doctor, By Elizabeth Scarboro

Please check out the link to The Huffington Post to read published writer Elizabeth Scarboro’s experience with a  a great CF Doctor. Some of us might take it for granted that this is everyone’s experience with doctors but it is just not so.

I met Dr. Stulbarg when I was 22, and had just moved to San Francisco to be with my boyfriend Stephen. Stephen had cystic fibrosis, but he’d been unusually healthy as long as I’d known him. Then, three weeks after my arrival, on a Saturday night, his lung Continue reading Anatomy of an Excellent Doctor, By Elizabeth Scarboro

Is a ‘buttery’ molecule behind cystic fibrosis flare-ups?

A molecule previously linked to lung injuries in factory workers producing microwave popcorn might play an important role in microbial infections of the lung suffered by people with cystic fibrosis (CF), according to a recent study led by San Diego State Continue reading Is a ‘buttery’ molecule behind cystic fibrosis flare-ups?

Study Related to Adolescents with Cystic Fibrosis

My name is Mindy Moore, and I am a doctoral student in Clinical Psychology conducting research related to adolescents living with CF. I have worked with a number of adolescents in my career as a social worker and would like to contribute to the body Continue reading Study Related to Adolescents with Cystic Fibrosis

Helping Sick Parents – Part II: Guest Blog by Jeanie Hanley

I couldn’t do it. I kept feeling that I needed to physically be at the hospital to meet with the social services, rehab specialists (PT/OT) and doctor for my mother who has advanced dementia that declined after an arthritic knee caused her to fall and to lose the Continue reading Helping Sick Parents – Part II: Guest Blog by Jeanie Hanley