Welcome to the CFLF blog written and posted by four adults living with Cysitc Fibrosis.  The intention of this blog is to share with the greater CF community (and beyond) some of their stories and tips for living and thriving with CF.  The authors of this blog hope to share firsthand their unique experiences of navigating their way to health and wellness.  Although none of them are “experts” in this field, each of them is an expert in their own CF care and hopes to share with others their interpretation of what it takes to live a longer and stronger CF life.

 

Klyn Elsbury

Age: 26

Location: Traveller (San Diego); Split time between Orlando, Boston, Dallas, San Diego

Occupation: Board of Directors CFLF, Socialite & Public Speaker

Activities: Being happy, Biking, Running, Trailblazing, Dancing, Networking, Biotech/Pharma events, Public Speaking, Beach Living , Networking, Laughing until I cough

So there I was...coughing and hacking, my body shaking from the IVs that coursed through me to overcome a common Cystic Fibrosis infection, Psuedomonous.  Sore from the constant waves of lung clearing asthma attacks, ready to just realize that this is the “downward spiral” patients are warned about.  My recruiting career had come to hault, my lung capacity hovered at 45%, and I was 1500 miles away from friends or family; cooped up within hospital walls on my 26th birthday.  

I’ve always been told when the disease progresses, it’s like a “downward spiral” and a transplant is an inevitable option.  Depression will set in as lung function plummets and I spent a day thinking about my death.  My memorial, the faces of my family and friends, what flowers I would want, what hillside my ashes would be spread on.  The next day it hit me...Despite all of that, I still had 45% left and rather than tip my mind into the abyss of what my death would be like, I focused about what life could be like.  Henry Ford has been credited as saying “Whether you think you can, or think you can’t- you’re probably right”.  I didn’t want to think at 26, my days were limited...I wanted to think about a life of travel, love, family, friends.  When my IV pump beeped that it was finished, I changed into workout clothes.  

I took the first step out of that private room on the 2nd floor and my legs carried me down the stairs to the sun shiney outdoor world in San Diego.  There’s a trail that goes along the hospital and despite walking, stopping, hacking, walking, I knew if I put one foot forward my lungs would get better.

Two weeks later, I was at 70%.  Two months later, I finished a 7.7 mile trail run on the mountainside in Poway.  When you force your thoughts into what could be and learn to dismiss the negative energy forcing you down, you realize 70% lung function may not be 100%, but it is a heck of a lot better than your loved ones faces as you’re memorial comes to a close.    And that, my lovely readers, is why we all have a reason to wake up happy, breathe as deep as we can, and live!

 

Erin Evans

Age: 30

Location: Riverton, VT

Occupation:  Program Coordinator for the Cystic Fibrosis Lifestyle Foundation

Activities:  Running, cycling, yoga, softball, hiking, snowshoeing, disc golf, hitting golf balls, pool, ping pong, riding my motorcycle, playing with my dog, swimming, kayaking, juggling, paddle boarding, basketball, soccer, bocce, badminton

The best advice my doctors gave my parents when I was diagnosed with CF at a little over a year old, was to treat me like a normal kid.  So that’s exactly what my parents did, they raised me just like my two older brothers.  I didn’t get any special privileges, I was expected to keep my room clean, and set the table, to keep up with my school-work and to work hard in everything I did.  I had a pretty typical childhood and because of that it rarely crossed my mind that I was different than most of my peers in that I had a chronic illness.  It wasn’t until I had graduated from college that I went into the hospital for the first time.  When I was there I just accepted that this was what was “normal” for people with CF and that I had just been lucky to have gone so long hospital-free.  As I lay in bed for those two weeks though feeling more and more lethargic and down I realized that the biggest thing that had changed in the last few years of my life was that I had completely stopped exercising.  In high school I played sports all year round, there was rarely a day during that time that I wasn’t doing something active.  As I got more immersed in college exercising took a back seat and my PFT’s slowly went from my baseline being 100% to 80%, which is still good but a huge decline for me.  I knew I needed to find a way back to where exercising was part of my life.

Over the last few years I have worked harder than ever to find activities that I enjoy doing that keep me active.  In the spring and summer I play on a co-ed softball team which is tons of fun.  I also have a weekly yoga class that I have come to rely on each week.  Going out and running or biking by myself takes a huge amount of motivation that I don’t always have.  With CF, everyday you must make a choice to keep fighting or to give into the disease.  Exercising and staying ahead on treatments and medications is all part of how I’ve learned to stay alive.  Every day I wake up and have to make that choice to do whatever it takes to keep myself healthy.  In the end that’s what motivates me, its not the hope of running a 7 minute mile, or looking physically fit, its being able to take a deep breath and actually feel every part of my lungs fill with air.  It’s chasing my nieces and nephews and not having to stop to catch my breath.  It’s waking up and knowing that I’m going to do everything I can to survive.

 

Vicki Thompson

Age: 28

Location: Long Island, NY

Occupation: Art Therapist/ Yoga Instructor / Lifetime Student

Activities: Yoga, hiking, surfing, snowboarding, swimming in the ocean, dancing, hula hooping, walking forever and biking  

I am excited to share some stories and insights into the human comedy of living with Cystic Fibrosis. My posts will circulate between 4 categories; Earth, Wind, Fire and Water. Earth posts will tell of stories involving community. Wind posts will be stories of topics invisible to the naked eye. Fire posts are passion posts and Water posts will be posts involving water and it’s healing entities. Yoga, snowboarding and surfing have played a major role in my increased body awareness, health and happiness.

A little bit about me; over the last 10 years I’ve lived in 5 states exploring which each has to offer, meeting the people and monitoring my health while also finding a new affinity for a sport that aligned with the environment. In Hawaii, it was surfing. Colorado, it was yoga. California, rock climbing and snowboarding. Challenging the body challenges the mind and as we all know, a stale mind will lead to the deterioration of the body. The last 10 years have been filled with any ups and downs. There was a time period of about 2-3 years where I was hospitalized every other month. It was scary but has also made me appreciate every single day and every single breath. I had to come to a harsh realization that my life needs routine to be healthy and long. As a gypsy, this was extremely hard to accept, but I think I’m coming closer and closer everyday to finding the balance of healthy traveling happiness.

Whenever I am hospitalized my body and mind are placed two steps back at least. So having to repeatedly start over with gaining muscle mass, building mental confidence and the hardest part yet, listening to my body's limitations, aka patience is the most challenging part of cf. However, everytime I overcome a hospitalization, I am stronger mentally and physically than before. I’ve learned what I need and what I want in medical care and this life lesson from all of my experiences has put me where I am today. I look forward to sharing stories of these experiences and hope to build more of a pervasive cf community and support through the readers, and remember, resilience creates!!!

 

Brian Callanan

Age: 38

Location: Miami Beach, FL

Occupation: CFLF Founder & Executive Director

Activities: Traveling, mountain bike (trail) riding, distance swimming, road biking, sailing, hiking, snowboarding, water jet-packing, playing with my dogs, spending time with loved ones; On the list - surfing, kite boarding, skydiving, more travelling

I have often heard people say they are not defined by their CF, as though that were a negative or limiting factor.  Embracing CF as my defining reason for achieving health, as opposed to avoiding illness, helps me view it as a driving force and a challenge to be dealt with everyday.  I don’t completely agree with the combative nature of the “Fight against…” anything, but find insted that acceptance and utilization of that energy to be as potentially positive as it could be negative.  

Choices.  One of the beauties and potential downfalls of being human.  The free will to make the choices that can, and do define us - physically, emotionally and socially.  Some of my favorite quotes are: “I don’t let the signs fool me!”, “Humans plan. God laughs.”, “Do, or Do Not.  There is no ‘try’.” and “The road to hell is paved with intentions.”  No matter what the words of wisdom, I find that it is our own choices that make up our reality.  

I look forward to sharing some of the experiences and forces that have shaped my perspective in living with CF.  I have not always done everything ‘right’, but have attempted to do the best I can at whatever. The only thing that really will get me down is a feeling of “I could have done more”.

I am not, was not, and probably will not ever be a jock.  But I have learned that I am competitive, especially with myself.  Growing up with an older brother with CF, we competed with each other fiercely for the best lung function and weight gain at each quarterly doctor appointment.  While the competition between us has calmed, I still push myself to defy the expectation of gradually declining lung function, and strive for a positive trend of improvement.  The words that came out of my mouth upon commencing my 2006 bike ride of over 2,000 miles changed my life.  “Keep telling me that I can’t, and that’s all the more reason I will.”

Having lost two brothers, not related to CF, the reality of mortality is very clear to me, as it is for most people facing the challenge of any chronic disease.  Part of that clarity, however, is that you only get one shot at life, and it is never long enough.