The Sour Side of Turning Lemons into Lemonade — Guest Blog by Reid D’Amico

“Stand on top of the mountain so that you can see the world, not so that the world can see you.”

With increased longevity and quality of life, cystic fibrosis (CF) patients are seeking greater levels of education. Even literature has started to acknowledge the great advances in CF, with articles now defining cystic fibrosis as a life Continue reading The Sour Side of Turning Lemons into Lemonade — Guest Blog by Reid D’Amico

How to Grow

When I was growing up in the 1980s, it sometimes seemed tough to find adult role models who also shared my disease to show me what it looked like to be a “grown up” with cystic fibrosis. We didn’t have widespread access to the internet in those days, and even the Cystic Fibrosis Foundation’s Great Strides walk to cure CF wasn’t started until 1989, so the primary point of connection with other people with CF was the clinic waiting room, which didn’t exactly lend itself to deep conversations. Many people in my generation were lucky enough to attend one of several CF camps operating back then – bustling hives of campers and counselors where kids with CF could bond over shared illness and shared laughter, all while gleaning wisdom and support from older participants – but I was heavily into competitive horseback riding and never attended those summer getaways.

So, as you can imagine, I clung fiercely to those CF mentors who did find their way into my inner circle. There was the woman from my small(ish) hometown who had CF and a successful pregnancy after the doctors warned her not to, and from her I learned that sometimes pushing boundaries can have incredible results. She and her son are still thriving today – and I now kind of love seeing her smiling face pop up on my Facebook feed. There was another young woman in her 20s who attended the American Airlines Celebrity Ski event along with myself and two other girls my age with CF. She was far sicker than anyone I had ever known with CF, and yet she showed up every year (sometimes with a PICC line in place, her oxygen tubing snaking off her too-thin frame) – until one year she didn’t and I experienced one of my first lessons in the brutal reality of the CF monster. In her I recognized the importance of connection, of showing up, and of grace under fire. I also remember her snarky, somewhat irreverent sense of humor, and how I promised myself that I, too, would find laughter in the shadows. And there was a young man, pushing himself through college as I tried to adjust to high school with CF. He and I often shared a “suite” in the hospital (two single rooms connected by a shared bathroom – what passed for infection control in the 1990s) and I would watch him with his open textbooks sitting at the nurse’s station to use the ward’s sole patient computer. I was impressed by his dedication, especially as he continued to struggle with his health, though I sometimes wondered what he planned to do with his degree once his frail body earned it. He was the one who told me, shortly before his graduation, that having goals despite an uncertain future was an end unto itself. Through his example, I realized that taking a leap of faith is worth it, nowhere how you land.

As I grew older with CF, through college and law school and my career and transplant, I found other ways to connect with the CF community. I discovered Cystic Fibrosis Research, Inc, the CF Roundtable newsletter, the CFF’s Young Professionals Leadership Committee, Cystic-L, and, of course, the internet. I met more and more adults with CF who were (and are!) challenging norms, defying expectations, and pushing themselves in ways that inspired and delighted me. I’m proud to say that I can now place myself securely in the company of a thriving adult community, which is good, because I have many, many more lessons to learn.
But I still remain grateful for those early lessons, from mentors who probably didn’t even know important their guidance was to me at the time. I often wonder what the examples we set today will mean to those coming of age now, as this amazing adult community continues to grow – together.

Fear Not–Guest Blog by Steph Rath

Know that the greatest fear is fear of the unknown.
Seek to meet the unknown with courage and a sense of adventure.
– Jonathan Lockwood Huie

Having CF means that you frequently have to deal with the unknown and the fear that can come with it. You might ask yourself “Will I be healthy enough to Continue reading Fear Not–Guest Blog by Steph Rath

International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety

http://m.thorax.bmj.com/content/early/2015/10/09/thoraxjnl-2015-207488.short?g=w_thorax_ahead_tab
Abstract

Studies measuring psychological distress in individuals with cystic fibrosis (CF) have found high rates of both depression and anxiety. Psychological symptoms in both individuals with CF and parent caregivers have been associated with Continue reading International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety

CF Podcast 153: CF, Living in Two Worlds, the Healthy and the Sick with Jen Eisenmann

Today we meet Jen Eisenmann, a 44-year-old living, breathing, and succeeding with cystic fibrosis. Diagnosed at 12 months old, Jen grew up similarly to most other kids, other than having to take enzymes and do occasional chest Continue reading CF Podcast 153: CF, Living in Two Worlds, the Healthy and the Sick with Jen Eisenmann

Searching for Normal: “Breathe. A True Story” Theatrical Autobiography Chronicles CF Struggles, Inspiration

Published in Cystic Fibrosis News Today on September 15, 2015
By Reid D’Amico

http://cysticfibrosisnewstoday.com/2015/09/15/searching-normal-breathe-true-story-theatrical-autobiography-chronicles-cf-struggles-inspiration/

“Brennen Reeves just wanted to be normal. The only problem: the fatal lung disease, cystic fibrosis.  The only solution: a double lung transplant.  Hilarious Continue reading Searching for Normal: “Breathe. A True Story” Theatrical Autobiography Chronicles CF Struggles, Inspiration

Why We Do It–By Gunnar Esiason

What’s in it for us? Why do we live this life? Why do we do it, and maybe more importantly, how do we do it?

The complexities in the answers to these questions could certainly fill the pages of an entire book, but since this is a blog, and since you’re undoubtedly cutting into your workday to read this, I’ll just scratch the surface. Continue reading Why We Do It–By Gunnar Esiason

Scientifically not Scientific–Blog by Gunnar Esiason

I got a pretty interesting email (not saying that every email I get isn’t interesting!!) from Nicole, 28 with CF, the other day. It was somewhat of a response to my last Ask Gunnar blog, and specifically the Continue reading Scientifically not Scientific–Blog by Gunnar Esiason

Jerry Cahill’s Cystic Fibrosis Podcast with jessie Ennis

Today we meet Jessie Ennis, a 22 year old with CF who was born and raised in Dublin, Ireland. Because of a family history of the disease, Jessie’s parents had her tested for CF before she was six weeks of age. Continue reading Jerry Cahill’s Cystic Fibrosis Podcast with jessie Ennis

Own Your Feeding Tube with Gunnar Esiason: Episode 5

Success with the Feeding Tube

This is the final episode of the Own Your Feeding Tube video podcast series. Here, you will see how the feeding tube has helped me immensely over the past 4 years. I have gained about 30 pounds, and Continue reading Own Your Feeding Tube with Gunnar Esiason: Episode 5