April 2009

Chad Brown

“No matter what, never give up.  It is your life, and you only have one, so take charge and do with it what you will.”

I was diagnosed with CF when I was only one day old.  I was always treated very differently and in many ways babied.  This temporarily helped me cope with my disease; however, it eventually took a negative toll on me.  I really was not affected by CF until I was about 21 years old.  It was all downhill from there for about four years.  As a result of not taking care of myself, I was in and out of the hospital all the time and was eventually put on the transplant list. 

As a result of insurance issues, I eventually moved to Seattle, where my life began to change.  With the help from the doctors at the University of Washington Medical Center, I was able to get a new lease on life.  The thing that made the biggest impact on me was being disciplined with my treatments and exercise.  I quickly realized that the more I exercised, the more my health improved.  For me, swimming has kept me alive and healthy.  When I first started swimming, I could barely swim a lap.  I now swim five days a week for about 45 minutes each time and am feeling great!  My FEV1, which were at one point in the high 20s, are now at 58 percent, and I have more energy than ever.

Now, I am pursuing a college degree in engineering, working 30 hours a week, involved in a great relationship and looking ahead to marriage and starting a family.  Life is good!

Favorite Holiday: Thanksgiving
Favorite Food: Chicken
Favorite Pastime: Going to baseball games
One Word that Describes You: Committed
Favorite Movie: Field of Dreams
Favorite Music: Blues
Dream Vacation: Germany

Jenny Davison

“CF is a part of who I am, but it does not define me.”

I am 40 years old and have cystic fibrosis.  I am the youngest of nine children, three of which had CF.  Growing up in a big family, there was no time to feel sorry for one single person, so I was treated like everyone else.  Which in retrospect I believe helped build my strength and character.  I have always been very independent and a hard worker.

After high school, I attended the Fashion Institute of Technology in Manhattan.  I received a degree in textiles development and marketing and worked for a short time in the fashion industry.  I quickly realized my true desire was to help people, and returned to school to become a registered nurse.  I was able to maintain a career in nursing for more than 10 years, working in the pediatric ICU and the recovery room before I had to stop working.  The decision to stop working, although very difficult, was the right choice for me.

Family has always been very important to me.  I met my husband at a very young age and the decision to marry was an easy one.  The decision to start a family was obviously much more difficult.  We decided that if Tim was a carrier, we would not have any children.  But, he is not, so we went for it.  Luckily, at the time I was healthy enough to sustain a pregnancy for nine months. Our daughter was born without any complications and is now a healthy 11-year-old girl!  Having my daughter, Dara, was for me, the best decision I ever made. She has brought so much joy to our lives!

I recommend that to all people with CF that you get out there and live your life without putting any restrictions on yourself.  Being active is the key to a good quality of life.  I have always enjoyed skiing, swimming, riding my bike, whatever will take me outdoors and allow me to feel alive!!  Just because you have CF doesn’t mean you have to stop living your life.  I have always felt that I was going to do what everyone else does; I just have to work a little harder at it!!

Favorite Holiday: Christmas
Favorite Food: Ice cream and pizza
Favorite Movie: My Cousin Vinnie
Role Model: My mother
Favorite Color: Orange
Proudest Moment: Getting married and giving birth to my child
Dream Vacation: Australia

April 2009

Tiffany Christensen

“It’s not how many breaths you take, but the moments that take your breath away.”

At six months of age, I was diagnosed with cystic fibrosis. At 12, I had my first in-hospital stay and began physically and emotionally grappling with the difficulty of this disease.  In 1996, at age 21, I was too sick to keep up with my college classmates. I had to give up my acting dreams and drop out of school, and at this time I was listed for a double-lung transplant.  In 2000, my life was spared by the gift of a double-lung transplant. For two years, I did well physically but struggled to find a healthy relationship and meaning in my life. In 2002, I received the devastating news that my lungs were being rejected, and I became very sick very quickly.

With no second transplant in sight, I found my inner world opening as my outer body weakened. I discovered a connection to the universe I had never known, and my self image began to shift. Instead of defining myself by my actions, I was able to go deeper and find my true essence. This is the “Permanent Me.” This new understanding of myself and others allowed me to embrace the idea that I was valuable; in a hospital gown or in an evening gown! The person inside the wrapper remained the same.  I was able to get a second transplant in March 2004. When I woke up in ICU, I knew I wanted to dedicate my life to those touched by illness.

Today, I am in my mid-30s and am enjoying the best time of my life. In 2007, my first book, “Sick Girl Speaks!” (http://www.sickgirlspeaks.com) was published and became popular with patients, families and healthcare professionals. I also enjoy the role of Illness and Transition Coach, helping other patients navigate the healthcare maze. Since 2005, I have participated in many exciting speaking events.  While my career gives me great satisfaction, my greatest joy has come from meeting the man of my dreams, adopting one crazy Whippet and enjoying life with my wonderful friends and family. I know that life is precious and precarious. It is my hope to live each day with integrity and purpose; leaving no room for regrets.

Favorite Food: French Fries
Favorite Color: Blue
Nickname: Nina
Awards: Heroes of Hope
Favorite Holiday: Halloween
Dream Vacation: Denmark
Favorite Music: Alternative
You can find Tiffany on ... Facebook, Twitter, Cystic L, Second Wind, www.sickgirlspeaks.com

April 2009

Amy Purdy

“The past is history, the future is a mystery, but today is a gift—that’s why they call it the present.”

My whole life, I have always considered myself a caring person.  The decision to become a social worker was an easy one for me.  Originally from Long Island, N.Y., I attended the University of Albany for my undergraduate degree.  I later graduated from Adelphi University, where I received a master’s in social work.  Throughout my education, I had numerous internships that helped me realize that social work was the right fit for me.

I have been a social worker at Saint Vincent’s CF Center in New York City for more than 10 years.  There are more than 170 cystic fibrosis patients where I work full-time for the center. This has allowed me to form many great relationships with my patients, to the point where I know what their favorite flavor of bubble gum is.  I have the opportunity to work on various issues, including medical insurance, medication compliance, educating families on CF, transplant issues, and just being there for the patients.

Having CF definitely complicates aspects of a person’s life, and that takes a toll on patients in many different ways.  I try my best to make my patients feel better, whether they are adolescents to whom I am teaching the importance of being compliant, or dealing with parents, who are feeling guilty or overwhelmed.  It is my job to take the daily stress off of patients by becoming like a personal assistant. 

Favorite Holiday: Easter
Favorite Food: Pickles
Favorite Pastime: Tennis
Nickname: Aimes
One Word that Describes You: Cheerful
Favorite Movie: Hunt for Red October
Role Model: My sister
Favorite Music: Elton John

Laura Tillman

“The Essence of Compassion: Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and wrong ... because sometime in your life you will have been all of these.”

I grew up in Michigan and was diagnosed with cystic fibrosis in 1995, at the age of 47 and after years of suffering from chronic sinus infections, a chronic cough, pseudomonas infections, and a sundry of other symptoms.  I am currently 61 years old and have been married to my husband Lew for 33+ years.  I took early retirement in 2000 from my position as a certified school psychologist, due to constant infections acquired from working with infants and toddlers.  Since then, I have been involved in volunteer activities for various CF organizations, both state and national.  I currently serve on the board of directors of a state organization, as well as USACFA.

Initially, after diagnosis, I was completely compliant with all the recommended treatments while still working full-time.  However, finding the time to get adequate sleep and exercise was next to impossible. After five years of declining health, I decided to take early retirement, which was the best decision I could have made as far as my health was concerned. 

I have found that maintaining a positive attitude and a sense of humor can be very beneficial to my health. One of my favorite little sayings is “she who laughs, lasts …”  I feel that volunteerism, attitude and humor—as well as the support of my husband—are as important as the medicines and treatments I will continue to receive throughout the remainder of my life.  My husband and doctor might take exception to this and add that my stubbornness and feistiness also keep me going.

Although I’m pretty insistent in determining the terms of my care, I will do whatever I consider reasonable in order to achieve my goal of living a very long and fulfilling life. I know CF is a monster that can turn quickly and rear its ugly head.  That’s why it’s good to be prepared with knowledge, a great doctor, and flexibility in one’s attitude.  The key to maintaining one’s health status is to be as knowledgeable about your own body as well as to be a very informed medical consumer.

Proudest Moment: Asked to be a god parent
Favorite Food: Middle Eastern
Favorite Color: Mauve
Favorite Movie: Gone With The Wind
Favorite Hobbies: Baking, pilates, animals, reading
Awards: Years of Dedication Award from CFF, 6th Grade Spelling Bee
Dream Vacation: Bostwana and Victoria Falls, Africa
Favorite Music: 60’s
Passions: Travel, theatre, opera, dance
You can find Laura on ... Cysticfibrosis.com, Cystic L

April 2009

Jerry Cahill

“CF is like being in a battle zone during wartime. There will always be many tough challenges to face, but you just have to do your best and be prepared to keep fighting.”

Since being diagnosed with cystic fibrosis at age 11, I have viewed my CF with this type of tough stance.  After being diagnosed with CF, my family didn’t treat me any differently, which I believe is one of the biggest reasons I am living, breathing and succeeding with CF today at age 52. 

At a very young age, the importance of exercise and sports were taught to me.  I have four brothers, and growing up I played every sport they did, whether it was baseball or football or basketball.  My family helped me realize that through exercise I can live a healthier life which would permit me to live like everyone else. 

I was able to enjoy a successful career as the vice president of a large men’s designer sportswear company.  In addition, I have competed at the national level in the pole vault, with a personal best of 16’ 10”, and I have completed two New York City marathons.

I currently live in Brooklyn, N.Y., and am a volunteer at the Boomer Esiason Foundation. I lead the Foundation’s scholarship and grants division and am the founder of Team Boomer, an athletic organization dedicated to encouraging exercise among CF patients while simultaneously raising money for scholarships.  I enjoy coaching pole-vaulting at Iona Prep High School in New Rochelle, N.Y., riding my bike, swimming and lifting weights.

I am very disciplined in taking care of my health and doing my therapies so I can experience life to the fullest!

Proudest Moment: Pole vaulting 16’ 10”
Favorite Food: Italian
Favorite Color: Blue
Nickname: BigAir
One Word to Describe You: Competitive
Favorite Holiday: Halloween
Dream Vacation: Italy
Favorite Music: Reggae
You can find Jerry on ... Facebook, MySpace, www.jerrycahill.com, www.myteamboomer.com, www.cysticfibrosis.com