Club CF 30+

People with CF who are LIVING, BREATHING and SUCCEEDING at 30+ may be very involved in their careers, climbing the corporate ladder and working on a relationship. Marriage, buying a home and starting a family are also common undertakings for people with CF, as they are living longer and benefiting from a better quality of life due to advances in therapies.

During their 30’s, CF patients may be doing more IV antibiotic therapies, more chest airway clearance therapies, looking into getting a Mediport to make things easier, maintaining their health through exercise and compliance, and coming up with clever ways to manage all of this while socializing.

September 2011

Josh Mogren

“I will continue to share my story and try my best to touch as many lives as possible by always going by my motto “I rather try and fail, then fail to try.”

My name is Josh Mogren. I am 32 years old, and I’ve been married to my wife, Carly, for almost six years. I am very happy and blessed to say that we live a wonderful life together with our puppies! Although life has been great for me, I can’t say it has always been easy. I was diagnosed with CF at the age of three months, and I also had to watch my sister pass away from CF at the age of 16, which was by far the most difficult obstacle I have had to overcome in my lifetime.

My family - which consisted of my mother, father, sister and me - lived in Lake Elmo, Minn., which is a suburb of St. Paul. I was very privileged in that my parents never made CF a focal point. Although it did take up a great deal of my time, they always wanted me to live my life as normal as possible. This meant going to school, doing activities and always trying new things. My mother always said, “Never let anything hold you back,” and this has stuck with me always. It was very difficult to watch my sister be sick most of her life, but this has helped me always live my life to the fullest and do my best to help others. I realized I could either feel sorry for myself or take care of myself and help others.

I received a degree called personal and civic advocacy, and I use this when I speak publically and write for people to see. I hope any bit of advice I have can help someone else in their life. When I am not working, I also enjoy karaoke and watching football and baseball.  For volunteer work, I love to help out for Big Brothers and Big Sisters, and I also speak at local schools. To me, motivational speaking is so important, and it really helps brighten the days of many who are going through difficult times in their lives. There are many different ways to reach your target audience, but I personally enjoy using a puppet named Moganko to reach out to children who are dealing with CF. They are able to learn about CF through humor and honesty, and this is truly rewarding to me. I will continue to share my story and try my best to touch as many lives as possible by always going by my motto “I rather try and fail, then fail to try.”

Favorite Holiday: Thanksgiving
Favorite Food: Italian
Favorite Pastime: Baseball and Football
Nickname: Mogey
One Word to Describe Me: Caring
Role Model: Anyone who does the best they can every day
You can find Josh on ... Twitter, Facebook, YouTube and his blog (http://www.welcometojoshland.com/)

July 2011

David Wagner

“I am extremely happy with my life and I would like to show by example to others that life with CF can be a happy one!”

My name is David, I am 36 years old and living with cystic fibrosis.  I was born in Iowa but have called Minnesota home for most of my life. Although I only have two biological siblings, one of which has CF, there are 17 people with CF in my family. I was adopted into a loving family of which many have CF, and each day is truly a blessing with such special people.

I am grateful that I was able to get my nursing degree from Hennepyn Technical College and be able to use that knowledge in my career today as a nursing assistant home healthcare provider. I do specialize with CF patients. Although to many that can sound risky, I do take all precautions, such as always thoroughly washing my hands. This is a true passion to me, and I am happy to say that I am part of the National Registry for CF Nursing Group, and with this I am able to give back to the many patients living and battling daily with CF.

Along with working, I also enjoy doing a great deal of volunteer work. I am part of the neighborhood watch program, which is very rewarding to me because this gives me time to exercise while watching out for others. I also spend a lot of time running a 24-hour CF support group hotline. This hotline helps the many CF patients and their families to have a place to call for any reason at any time.

Other than working and providing my time to the community, I do try and stay active. Although I am not able to play hockey like I used to, I still enjoy swimming and bowling.  I hope to continue being healthy enough to travel down the path I am going down to not only better myself but all others around me.

I know how important it is to stay compliant with my medication and treatments even when times get tough. To me, not taking care of myself is like a free ticket to jail because if I don’t take care of myself, I will be sick and not able to do anything.  I am so proud to say that I have been able to help so many, and I can only hope that I can continue helping many more and hopefully keep meeting my goals. I am extremely happy with my life and I would like to show by example to others that life with CF can be a happy one!

Favorite Holiday: Christmas
Favorite Food: Alligator
Favorite Pastime: Hockey
Favorite Movie: Harry Potter
Favorite Music: Country
Favorite Color: Red
Nickname: CF Kid
One Word to Describe You: Helpful
Role Model: Kirby Puckett
Favorite Words of Wisdom: “CF will not stand for cystic fibrosis, it will stand for CURE FOUND … ”
Dream Vacation: Walt Disney World
You can find David on: Facebook, Twitter and Cystic-L

April 2011

Karen Vega

“CF has not determined my life for me, I have determined it for myself, and I am forever grateful.”

I am 30 years old and currently living in Cortlandt Manor, N.Y. I have always lived in New York; I grew up in the Bronx with one brother who is now 26 and also living with CF. I attended Fordham University, where I studied accounting. After college, I worked on Wall Street for six years, which was a very exciting part of my life.

I am now in a new stage of my life as I am a wife and a mother. I have been married for six years to my wonderful husband, Alex, and I have twin two-year-old-boys, Jayden and Logan. As you can imagine, they are now my full-time job, and I love every minute of it. When my husband and I made the decision to have children, we met with our doctor to discuss the possibility. My doctor wanted my PFT’s above 70 percent, and once we found out Alex was not a carrier for CF, we had the green light to go ahead. My boys are healthy and neither of them have CF. It was very difficult at first to bounce back into my routine of taking care of myself after having the boys, but I have now figured it out with help from my family. I have learned I am the most productive during “nap time!”

I was diagnosed with CF when I was eight months old, and I am thankful my parents did not treat me any differently. I played soccer and did cheerleading to stay in shape, and about a year ago, I got into running. I trained many long and tiring hours for the New York City Marathon, and I still run on a regular basis. To me, running is a huge part of my life, and it keeps me healthy! I have a wonderful husband and two beautiful children ... CF has not determined my life for me, I have determined it for myself, and I am forever grateful.

Favorite Holiday: Christmas
Favorite Food: Ice cream
Favorite Color: Purple
One Word That Describes You: Determined
Dream Vacation: Australia
Hobbies: Scrapbooking and running
You can find Karen on ... Facebook and Cystic Life

March 2011

Brian Johnson

“I was born with CF, I’ve lived with it my whole life, it’s all I’ve ever known, it is my life!”

I am 37 years old and I was diagnosed with CF at the age of seven in 1979. I grew up in South Georgia, where I was one of three boys and the only with CF. This did not hold me back, I was involved in pretty much every sport, such as baseball, basketball and soccer, and I’ve always been a huge football fan! I led a fairly normal life growing up. My brothers took no pity and that was the best thing for me. I also believe I grew up quickly and had to deal with my responsibilities with staying compliant. I was very active growing up and didn’t need a hospital visit until I was 23.

Attending Valdasta State University was very rewarding for me. I earned a bachelors degree in business administration and business management in 1996, and I also met my wife, Christie.  I’m now a father to a beautiful soon-to-be three-year-old daughter, Hayden. Being a husband and a father, along with holding a full-time job, can be difficult, but it has truly been a blessing.

About eight months ago, I hit a very dark period of my life, and it wasn’t until I was driving down the road and saw a motorcycle and got an idea in my head that my whole life changed. I had never ridden a bike before, but it was like a sign that this was going to be my mission. I started an organization called CF Riders, and our mission is to ride across the country while spreading a message of inspiration and hope. The message I would like to extend is that you are not bound by CF.

I also live life on a daily basis by a quote that I created. I always say, “Dream big, ride free, breathe easy.” To me, this means I am now following my dream, I am getting on a bike and not holding back and breathing easy while living life with the deadly disease cystic fibrosis. I will be leaving for my journey on April 15, 2011, with my wife and daughter alongside me. I hope to gain many followers along my journey, and together we can all beat CF.

I have found my calling in life, and I can only hope the CF Riders will spread awareness around the country and hopefully one day play a role in CF standing for “cure found.” I hope my story will show others that CF does not hold you back from everything; I see it as a positive in my life. I am 37 years old ,and I am proud to live each day to the fullest with my wife and daughter.

Favorite Holiday: Christmas
Favorite Food: Sushi
Favorite Pastime: Baseball
Favorite Movie: Forrest Gump
One Word That Describes You: Perseverance
Role Models: Ronnie Sharpe and Jerry Cahill
Dream Vacation: Australia
You can find Brian on ... Facebook, Twitter, cysticfibrosis.com and CFsocial.net

July 2009

Cris Dopher

“Keep moving forward.”

At four years old, I was diagnosed with cystic fibrosis. With my boyish good looks and Southern California residency, I was chosen to be the poster child for the San Diego chapter of the Cystic Fibrosis Foundation. My face was put on CF posters and distributed throughout the Foundation and the greater CF community. Before I entered the sixth grade, my dad moved our family to Missouri, where I first learned the importance of exercising from CF doctors at the University of Missouri - Columbia Hospital.

Unable to play sports during my first years of high school after a farming accident crushed my ankle, I found a passion in theater. Soon I was designing sets as well as acting in my high school plays. After graduating from college, I attended graduate school at NYU and received my master’s in fine arts.

In the years following graduate school, I began to notice a progression in the severity of my disease. Last March, when I was 36 years old, I struggled with another exacerbation. Climbing a flight of stairs left me breathless, and I began to fear the worst. It was not until after the IVs started to work and I began exercising every day that I became stronger — both mentally and physically.

Even though it still remains a challenge to take the appropriate amount of enzymes every day, and eat as my doctors instruct, I am much more compliant now and rarely miss my treatments. There also is a greater need for me to maintain my health due to CF-related diabetes. I believe that the importance of compliance is the equivalent of how much belief you have in yourself and in your future.

I spend my free time volunteering and fund raising for the Boomer Esiason Foundation, which includes running for Team Boomer once a year. Making my own contributions to BEF allows me to give back and stay connected to the greater Cystic Fibrosis community. All in all, I keep moving forward — in my work, in my relationships and most importantly, in my healthcare

Favorite Holiday: Thanksgiving
Favorite Food: Sushi
Role Model: I admire my dad and the Jewish actor Zero Mostel, both for their resilience
Dream Vacation: An around-the-world motorcycle tour
Fun Fact About Cris: I rode my Harley to Alaska
You can find Cris on ... Facebook, running blog www.myteamboomer.com/profile/CrisDopher

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