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/)

August 2011

Keith Connolly

“I am at a very comfortable part of my life and have realized that exercise and being compliant by staying organized and planning ahead of time really pays off for my health.”

My name is Keith Connolly, and I am 26 years old. I was diagnosed with cystic fibrosis when I was just six weeks old, so the life I have always known is one with CF. I was born and raised in Cincinnati and am one of three brothers, two stepsisters and a stepbrother. Kyle is my identical twin, and he also has CF. Thomas, who is 17, and Michael, who is 8, do not have CF. Kyle and I were lucky enough to have mild cases of CF. I was not hospitalized until I was in college, but that was a very hard and grueling time for me. I did always stay active in sports, which most definitely benefited my health. Through grade school, I participated in baseball, soccer and football, and through high school, I was part of the wrestling and cross country teams.

I attended Xavier University in Cincinnati, and that is when, unfortunately, my health took a turn for the worse. I was diagnosed with “BOOP,” an inflammatory disease in the lungs. I was only the second person in the world to be diagnosed with both that and CF. I was also diagnosed my sophomore year with diabetes, and all of this caused me to be sick through most of college, with my PFT’s plummeting down to 40 percent lung function. However, I was committed and passionate about fighting through, and I am happy to report that after graduating college, I attended graduate school and received my MBA in 2010. I also passed my CPA exam that year.

My lung function is now up to 110%, and I credit this to consistent running and my newfound love for weight lifting. I became interested in competitive weight lifting about two years ago, and it has become a huge part of my life. This past July, I competed in the national championship and placed fourth in my weight class.

I am at a very comfortable part of my life and have realized that exercise and being compliant by staying organized and planning ahead of time really pays off for my health. As a new personal banker at JP Morgan Chase, I plan to continue staying healthy by planning out my days and staying motivated to beat this disease. I see a cure in the future, and I can only hope that I am here to witness that day!

Favorite Holiday: Christmas
Favorite Food: Steak
Favorite Pastime: Baseball
Favorite Movie: Rocky
Favorite Music: Rock & Roll
Favorite Color: Red
One Word to Describe You: Enjoyable
Words of Wisdom: “Exercise is just as important as being compliant with your treatments.”
Dream Vacation: Europe
You Can Find Keith On ... Facebook and LinkedIn

August 2011

Elizabeth Clark

“I have made it a point to raise my children to grow and be self-sufficient.”

I am a single mother of three children, two of whom have cystic fibrosis. My son, Jack, was diagnosed at seven months, while I was pregnant with my youngest daughter, Kate, who was also eventually diagnosed with CF. While my situation can be difficult, I am fortunate to live in an extremely supportive community and to have three children who support each other through life.

Raising two children with CF has changed my perspective as a parent. I look forward to every day I have with my children and have come to realize that when a child has CF, the whole family lives with it as well.

I have made it a point to raise my children to grow and be self sufficient – encouraging both Jack and Kate to take more responsibility for their medications and treatments as they grow older. Jack supplements his medical treatments by playing baseball, skiing, snowboarding, and, his favorite, skate boarding. Kate stays active by participating in theatre. I am so proud of my children for staying active in spite of their disease.

I have learned to be more courageous by raising Jack and Kate and watching them stay strong. They have taught me to appreciate what my family has every single day. We love spending time together at home, but also take advantage of Jack and Kate’s good days by going on family skiing and snowboarding trips.

My oldest daughter, Samantha, has become a rock for the entire family. She supports her younger siblings and I am proud to see the young woman she has become. I look forward to seeing all of my children grow and I hope to one day attend every single one of their college graduations.

Favorite Holiday: Halloween
Favorite Food: Linguine and clam sauce
Favorite Pastime: Reading
Favorite Music: U2
Favorite Color: Green
Role Model: Frank Deford, sportswriter
Special Quote: “Every man dies but not every man lives.”
Dream Vacation: Atlantis, Bahamas (kids’ dream)
You can find Elizabeth on: cysticfibrosis.com, Facebook, blog and Twitter

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

June 2011

Valerie Batz

“Life after a bilateral lung transplant has truly been a blessing. There is no coughing, and I feel like my lungs are two brand new beautiful pink balloons, as opposed to the old smashed ones I used to have.”

My Name is Valerie Batz, and I am a 52-year-old woman living with CF. I am 13 years post-transplant and loving life!

I was born in 1959 in New Hampshire and was diagnosed at 22 months of age. At this time, my parents were told I would not live to attend elementary school, and look at me now! I was one of three children, the middle child to be exact. I have a younger sister who is now 48 and does not have CF, and I have an older brother who is now 53, and he is living with CF as well. Growing up, my brother and I were treated normally, and I am forever thankful for that. My family did not live and breathe CF; each day just became a routine, and taking enzymes and medication was just like taking your vitamins. Other than complying, I also stayed active. I was a cheerleader throughout school, and I also enjoyed sailing in Lake Michigan with my family, along with skiing and swimming. I am very proud to say that I passed the lifeguard test even though my doctor said I never would. Other than coughing day and night, along with stomach aches time to time, I have led a very normal life.

After high school, I attended the University of Illinois, where I majored in international business. I also learned to speak both French and Spanish and was lucky enough to have the opportunity to study in Paris. I never let CF hold me back!

I have been married to my wonderful husband, Jay, for 24 years. We have 22-year-old twins, Jayson and Jamison, who are both graduating college. Neither Jayson nor Jamison have CF. Being able to have them was such a gift, and my biggest joy in life is my family. My first goal in life after my children were born was to see them graduate high school ... then to see them graduate college ... and now it is to see them get married. My other goal would also be to see a cure for CF in my lifetime.

Although I grew up living a very normal life, when I was about 40 years old, my health quickly went downhill. At this point in time, I had to stop working due to my lungs plummeting down to 30% lung function. I weighed less than 100 lbs, was on full-time oxygen and a feeding tube, and my doctor made it clear that I didn’t have much time. I mentally and physically prepared myself for the fact that CF was defeating me, and then I got the call. I was transplanted the next day, and the very second I woke up, I took a deep breath and smiled.

Life after a bilateral lung transplant has truly been a blessing. There is no coughing, and I feel like my lungs are two brand new beautiful pink balloons, as opposed to the old smashed ones I used to have.

Today, I believe there is not enough I can do for CF. I’m a guest speaker on CF and organ donation in health classes and local high schools, and I feel it is my duty to give back and promote donating life. I have lived life well, and being blessed enough to travel the world and live to enjoy my family, I am very content with where my life has taken me.

Favorite Holiday: My transplant anniversary (Rebirth Day!)
Favorite Food: Italian
Favorite Pastime: Reading
Favorite Color: Burgundy
One Word to Describe You: Spirited
Hobbies: Love to sew and cook
You can find Valerie on: Facebook, CF Great Strides and a Boomer Esiason Foundation podcast

May 2011

Kay Wharton

“I am very thankful that growing up I never knew the life expectancy of having CF, because I never had a number in my head to hold me back from what I wanted to do.”

Growing up as a child, I was the only one with a full size Kleenex box on my desk,but that did not phase me. I just thought I got sick a lot, and I had asthma. That was not the case, and I found out at the age of 21 that I had cystic fibrosis. Not only was I diagnosed with CF, but my sister was diagnosed at the same time at the age of 29. We were two of four girls - myself being the youngest of the four - and we were the only two with CF.

By the time I was diagnosed, I had already made it through my childhood years, and I was very lucky to be as healthy as I was without being treated for all those years. In school, I participated in track, partly because it was the only non-cut team! I believe that running track for the years that I did helped in the clearing of my lungs, as I coughed a great deal. After high school, I went on to college at Purdue University. This was a family tradition, and everyone in my family attended Purdue as well. I studied Industrial Illustration Technology in college, and after several jobs and lots of experience, I started my own business in print and web design (http://www.Wharton-graphics.com), and I am able to work from home.

Not only have I been lucky enough to have a successful career, I was also blessed with a wonderful family. I have been married to my husband, Randy, for 22 years, and we have a beautiful 20-year-old daughter, Ashley, who is attending the University of Missouri - Columbia. My husband has been such a positive influence on my life, and both he and my daughter are into exercising and will be running a half-marathon soon. Exercising has gotten tough for me, as I recently started using an oxygen tank, but I hopefully see myself participating in a 10K down the road! I would say that my biggest accomplishment was completing a triathlon.

I am very thankful that growing up I never knew the life expectancy of having CF, because I never had a number in my head to hold me back from what I wanted to do. I always say, “Health isn’t just the absence of disease; it is a combination of mental, physical and social well-being…you can be a healthy Cf’er!” Life with CF is what you make of it, each day is a blessing and you have to take it one step at a time. My first goal was to see Ashley graduate high school, then it was seeing her graduate college, and I am so thrilled to say that I now need another new goal ...

Favorite Holiday: 4th of July
Favorite Food: Cantaloupe and dark chocolate
Favorite Pastime: Drawing and painting
Favorite Movie: The Pursuit of Happiness
Favorite Music: Adele
Favorite Color: Green
Role Model: Parents
Dream Cacation: Cape Cod
You can find Kay on: Facebook, Great Strides, CF Choice, www.Wharton-graphics.com (here you can find examples of the work I’ve done, along with information on my involvement the CF Foundation and Habitat for Humanity)

Sandra Kindel

“Being a caregiver firsthand will forever be the most rewarding time in my life.”

I live my life for my kids, and I was a CF caregiver to my son Michael as a single parent for the 15 years of his life. Michael passed away at the tender age of 15, and this was the most difficult time for myself and Michael’s three siblings.

Michael began getting sick when he was just one month old, and he was diagnosed at four months old. Throughout Michael’s life, there were many difficult times dealing with the hardships associated with the disease, but all the kids supported him and were very proud of his strength and the fact that it was hard to tell he was sick because of his positive attitude.

Michael was an extraordinary young man, and I am so blessed to have had him in my life. Growing up with CF, Michael did not let anything hold him back. He was a straight A student; even though he had to be home-schooled the last couple years of his life, he never gave up. He graduated from middle school and received a scholarship for high school, and this was a very proud moment for the both of us! He was also very involved in the Make a Wish Foundation, as he participated in walks in Florida.

Michael began to get very sick around the age of seven, and at age nine, they told us he needed a lung transplant. This was very hard to handle at such a young age, but then, miraculously, he started improving and did not need the transplant yet. That was short-lived, however, and he then went from being sick to extremely sick. Michael knew he was reaching his last bit of time on Earth, and it was his wish to spend this time at home. Before Michael passed, he sat up and said he had to go, he knew he was ready. Although this was the hardest time on my family and me, he helped us accept his passing because he always had a smile on his face, and he let us know he was okay and he was ready to leave and go play.

After this devastating and emotional time in my life, I felt a little useless and was out of work for eight months. This was an awakening in my life, and I then became a Respiratory Therapist. I work with adults and many who have CF. My experiences with Michael now help me with my patients. He taught me more than I ever could have learned just by going to school to be a Respiratory Therapist. Being a caregiver firsthand will forever be the most rewarding time in my life.

Each day is a bit easier, and although Michael will not be back, I know he is with me and he is my guiding footsteps as he helps walk me through this life ...

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

January 2011

Dottie Lessard

“That’s the message for the kids and their parents: You can do anything.”

I’ll never forget the moment. I was in my early 20s, and my best friend since age 14 had died from CF a short while ago. She had a lung transplant lined up, but she was too sick to fly to Los Angeles for the operation. I was visiting with another friend who was in the hospital recovering from her lung transplant. One of us said something funny, and my friend laughed — without having a coughing fit. I couldn’t remember the last time I’d been able to do that.

Right then, I decided to have a lung transplant. One of my lungs at the time was at about 15 percent capacity, and the other was at 20 percent, but my doctor said that I wasn’t sick enough. This was in the early 1990s, and lung transplants were still very risky; they were a last resort for only the sickest of the sick.

But I fought and fought, and by 1992, I was put on a transplant recipient list. The doctors told me I was “trading one disease for another” and that I’d have only a 50-50 chance of making it off the operating table. But what I heard was that I had a 50 percent chance of living; at the time, I felt that I was just existing.

While waiting, I strengthened myself as much as possible.  I built a strong foundation despite everything that was trying to take me away.

I was always a tomboy. My dad was a hockey coach and girls couldn’t play on the boys’ team at the time, but I would play street hockey every weekend. In neighborhood football games, I’d always be at the bottom of the pile. When I played basketball, I’d get out of breath easily and cough a lot. So I practiced my shooting, and I became really good at it. I would be one of the first kids on the playground to be picked because I could score points. I maximized what I could do well.

I was on the transplant list for two years and seven months. During my 12-hour, double-lung transplant, the doctors said I “died” on the table two times, but my conditioning helped to save me.

My transplant was in 1994, and I’ve had amazing opportunities since then. I have won several gold medals in the 100-meter and 200-meter dash at the U.S. Transplant Games for the last 14 years. I have run half-marathons, and I do fitness competitions with obstacle courses inspired by military training exercises. Since I was a girl, I have loved the feeling of moving fast.

I work hard, and I train at least 30 to 60 minutes every day. I believe in quality nutrition, though when I want a treat, I take it.

In 2004, I became a mother.  I adopted my son, Liam, and I was in the delivery room when he was born. He is my reason for breathing and my inspiration. Every year on the anniversary of my double-lung transplant, October 27, I climb a mountain and place a yellow rose to honor the donor who gave me life. This year, for the first time, Liam joined me on the journey.

I’m a motivational speaker and a life coach. I have written a book about my experience as an ATHLETE, titled, Seven Letters That Saved My Life.

But my biggest inspiration is kids with CF. When I see them, I try to light a spark. I find out what they want to do. Maybe it’s athletics, and maybe it’s something else. With little kids, I get right down to their level, and I look them in the eye: “What do you want to do? What do you want to become?” That’s the message for the kids and their parents: You can do anything.

Favorite Holiday: February 11, my son’s birthday
Favorite Foods: Steak, pizza and Empower Pro Protein
Favorite Pastime: Spending time with my family, being active, giving back to others, reading motivational books
Favorite Movies: GI Jane and Rudy
Favorite Music: Top 40, Contemporary Christian, Andrea Bocelli
Favorite Color: Blue
Nicknames: Scrappy, Squirt, Run28
One Word That Describes You: Resilient
Role Models: My parents, Dave and Beverly; all children growing up with an illness who continue to smile and push ahead
Words of Wisdom: “I can do all things through Christ who strengthens me.” (Philippians 4:13)
Special Quote: “To truly live life fully, we must do the things we believe we cannot.” (Dottie)
Dream Vacation: As a family - Hawaii with Ben and Liam swimming with dolphins, playing on the beach, enjoying our life and health. For myself - Africa, to be able to be with amazing animals up close and living free.
You can find Dottie on ... Cysticfibrosis.com; Facebook; Myspace; CFsocial.net; Transplantbuddies.com

November 2010

Dona Korpics

“I guess everyone has a motto to live by, and our family has found one which has kept us going for a while: Failure Is Not An Option.”

My name is Dona Korpics, and I am getting ready to celebrate my 65th birthday.

In November 2009, I was diagnosed with cystic fibrosis. Yes, 64 and now I am battling cystic fibrosis.

It was a real slap in the face when I first heard it. My first thought was “they are wrong”—people my age don’t get CF. Slow but sure, they started to put things together and then came the “sweat test.”  Okay, now I have CF.
 
Thanksgiving wasn’t “Thanksgiving.” On top of this diagnosis, my husband of 46 years, Vince, was battling kidney failure, doing the dialysis three times a week, and we were struggling.  Christmas came and went, and we were both too sick to even go to out to enjoy the holiday. Our life was made up of dialysis, doctor appointments, and rush trips to the hospital for both of us.  Prescriptions, doctors, all new things for me trying to go day to day. We were lucky to be able to obtain local transport on our “Pocono Pony,” the bus for all of us who needed to get out but couldn’t do the driving.

After discussing it among themselves, our daughter, Jackie and her husband, David,  our daughter, Kay, and her lifetime companion, Amy, and our daughter, Vicky, and her husband, Brian, decided that come spring, we were moving in with Jackie and David,  no questions. Vince and I fought it tooth and nail, but living in the Pocono Mountains where snow piles up, we had no choice.

We thought we had things under control for now, but on a sunny day with a little snow falling in March, Vince collapsed and died in my arms before the ambulance and paramedics arrived. I held him close, but I knew he was gone. That is where “MY STORY” really begins.

Okay, now I am fighting a life-threatening disease, I am a widow, moving to a new place, new doctors, new hospitals and something called CF. I met with the CF team in Hershey, Penn. It is one-and-a-half hours from my daughter in Allentown,  so it is tough when I go and have to stay. So when I took a turn for the worst this past September, I needed to be admitted to the facilities at the Lehigh Valley Hospital Center in Allentown, Penn.  It may be tough dealing with someone my age, but they are getting used to it.

I was never very sick in my life. I married, had four children—three girls and one boy. Then in the last two years, my health took a turn for the worse.  On one emergency trip to the hospital, I was amazed when a new doctor I saw in the ER spotted something because she had spent some time in a CF clinic in Philadelphia, and so the CF diagnosis. It has become a real family thing, with everyone keeping up to date with the new advances that come by and following up with new things they read and find online.
I have started a whole realm of new things to keep me occupied. I am on oxygen 24-7, and walking isn’t the greatest, so I do a lot of computer work. I have been updating our family tree and have actually started on a series of books I started years ago. Now I can add another one, about being 64 and having CF. There are new drugs to try and diet changes that have to be made.  I do get out and about on my electric scooter and my portable oxygen. I just completed a new drug therapy, a new inhaled antibiotic which I had hoped will increase my pulmonary function and increase my air flow.  So far it has not totally kicked in, so I guess I will have to try another plan.

I am looking forward to the upcoming years when they will come up with a cure for this dreaded CF.  I guess everyone has a motto to live by, and our family has found one which has kept us going for a while: “Failure Is Not An Option.”  It comes from the NASA space mission # 13,  when the spacecraft was in peril, but they all made it through.  I think that is what my life is right now, a mission which has taken a slight turn, and I need to get it back on track.

So this is my story, my life and a mission. I want everyone out there who are family members, caretakers, researchers and the professionals who see us on our good days and our worst days to know how much we as patients appreciate what you do for us everyday. And to those of you who help with the fundraising and work on letting the world know how hard this disease is, if you work hard, we will keep working hard too.

October 2010

Danny Ferrone

“My feeling about CF is simple: Your life is in your hands.”

A lot of young people with CF think that a gradual decline in their health is inevitable.  My life shows that it doesn’t have to be that way. 

I was very healthy as a kid, and I was constantly playing all kinds of sports, including years of being on very competitive travel soccer teams.  But my health started to decline when I was about 18 years old and in college.  By the time I was 22, my large-airway capacity had fallen to about 45 percent, and my small-airway capacity had reached to about 15 percent.  It was a struggle just to breathe right. 

I was just coming to grips with being a man and trying to make a life for myself.  My life, the quality of it and how long I was going to be here—those were the hard questions staring me in the face.  I went through some very hard times emotionally and, obviously, physically until I came to the decision that no matter what I would face in this life, I would fight with every thing I had, mentally and physically, until my last breath …because that is the only option, no matter what.

Today, I’m 26 years old, and my lung capacity is now back to nearly 60 percent.  I actually reversed the decline from CF, by literally ripping open my constricted airways. 

How did I do it?  I tried to qualify for one of the world’s toughest endurance races, the Ironman Championship Triathlon in Hawaii.  I threw myself into the task with fire and determination and something I call “positive madness.”  Also, put my training videos on YouTube, and I created the Fight Forever Foundation with my two best friends, Joe Dolan and Brian Annes, to help cure CF and inspire other people.

At the time I decided to train for the Ironman, I had never run more than three miles, I didn’t own a bike, and I had never done an open-water swim.  For the next two-and-a-half years, the Ironman was my one goal.  My typical routine was to get up at 3:30 a.m. and do my 90 minutes of CF treatments.  Then, I would run or bike for an hour or more.  I’d shower and eat, and I’d go to my construction job.  (I’ve been doing construction since I was age 12.)  I’d finish my eight hours on the job site at about 4:30 p.m., and then I’d do more training.  I’d go home, eat dinner, maybe do some work on the computer for the Fight Forever Foundation, and then sleep.  Then, I’d do it the next day. 

Along the way, I ran four marathons and completed three Olympic distance-triathlons.  I even quit my job and moved to Austin, Texas, for three months to train near where one of the 2008 Ironman qualifiers would take place.  Only the top finisher in each age group would get to go to the Ironman, and I came in 23rd, in a time of 5:48.  That wasn’t bad, considering the 25-minute bathroom break I had to take (thanks to CF) and a crash on my bike in a rainstorm. 

I didn’t qualify for the Ironman, but I gave the campaign everything I had.  I got healthy again, and I challenged myself.  Since I was a kid, I’ve felt most alive when I was doing something physical, and there’s no way that CF was going to take that away from me, without a hard fight.  Those lessons can be applied to anyone who has CF. 

Today, I’m working at a chiropractic and strength-training facility in Chicago, where I do things like give people electrical stimulation and ultrasounds before the chiropractor works on them.  In September 2010, I finished my courses at the National Personal Training Institute, which is my first step towards becoming a physical therapist and personal trainer.

Nagging injuries have stopped me from running or biking right now, but I still swim regularly.  I’ve also started conditioning at a boxing gym, and that’s an unbelievable workout.  With boxing, it’s all about explosiveness.  It’s just as hard—maybe harder—than the endurance workouts for the Ironman.

My feeling about CF is simple: Your life is in your hands.  That’s a big responsibility to lay on a kid or even an adult, and we wish it wasn’t laid on us.  But facing the challenge makes you stronger.  It’s a mental fight as well as physical. 

So, the bottom line with CF is that, unlike some other things in life, you can’t say to yourself, “I’ll cross that bridge when I get to it.”  You have to decide that the fight is worth it, dig in, and fight with everything you have.  And most importantly…in your toughest and darkest hours, remember that you are not alone.  There are not only many of us with CF, but many others in this life who are going through some very tough circumstances as well.  We are all in this together…DON’T EVER FORGET THAT.

Favorite Holiday: Christmas
Favorite Food: Italian
Favorite Pastime: Spending time with the ones I love
Favorite Movie: Rocky Balboa
Favorite Music: It depends on the mood
Favorite Color: Blue
Nickname: Boom Boom
One Word to Describe You: Heart
Role Model: I’ve had many different influences in my life both within my family and outside of it, and I’m very grateful to those special people who have taken the time with me along the way.
Dream Vacation: Any place with the ones I love
Words of Wisdom: You only fail when you don’t try

October 2010

Bob Esparza

“We realized there’s a difference between living with the disease and living your life.”

In September 2010, I did a podcast with [BEF Volunteer] Jerry Cahill, and I talked about my son Tyler, who is 10 years old and has cystic fibrosis.  In that interview, I said things that I’ve never said to Tyler, and that I’ve only said out loud to my wife and a few other people. (Click here to go to the podcast.)

A few days after the podcast went online, Tyler and I listened to it. When the podcast was done, Tyler’s first question to me was: “Will my life be shortened by CF?” It crushed me. I had to tell him that it might, but that we do the best we can with nutrition, treatments and exercise.

So far, we’ve been very blessed. When Tyler was five years old, he was hospitalized with a bad asthma reaction. Our allergist decided to do a sweat test, practically out of the blue, because of one or two other symptoms Tyler had. He came back with a diagnosis of CF, and it was quite a shock.  My wife, Susan, and I didn’t know anything about CF, and we don’t know anyone else on either side of the family who has it.

Tyler has not been hospitalized since his diagnosis five years ago, and we and our doctors have weaned him off all of the medications and enzymes. He doesn’t use a chest wall compression vest, and we don’t even have to hit his back at night.  Basically, his symptoms are very mild. When he gets an infection, we’ve been able to knock it out with antibiotics. Our doctors at Children’s Medical Center in Dallas have been great. I feel sort of guilty when I see what other families and their children are going through.

So, Tyler has a life that is very normal for an active 10-year-old boy. His ambition is to be a Major League baseball player, and we give him access to as many activities as possible, because we know that exercise is so important to maintaining his health. He loves to play with his friends and his siblings (our son, Julian, is 12, and our daughter, Reagan, is 8).

For the first six months after the diagnosis, we were very protective of Tyler; it was like he was in a bubble.  We told the staff at his school, and we brought in pamphlets about CF.  We bought umpteen bottles of hand sanitizer, and we asked his teacher to keep away any kid who had a cold.  We tried everything to keep him protected.  But we realized that we were scaring him and that he was not having any symptoms, so we started to ease off.  We realized there’s a difference between living with the disease and living your life.

We saw no reason that Tyler should be branded for having CF or that his dreams should be stunted when he’s doing so well.  So we make sure he gets plenty of exercise, and we keep our house spotless, and we try to get him to eat well (but we all know how few vegetables any 10-year-old will tolerate!).

We don’t tell him more about CF than he needs to know at this point.  He’s asked questions only a couple of times, like after listening to the CF podcast.  Most of the time, he would rather play basketball or baseball with his friends.  But, eventually, we will talk about it again. I hope that day is a long time from now.

Q&A WITH BOB ESPARZA
Favorite Family Activity: Playing in the pool
Best Home-Cooked Meal: Hamburgers on the grill
Favorite Vacation: Destin Florida Beach
Advice to Parents of Kids with CF: Our lives are pretty stressful as we cope with the realities; make sure you’re not just a parent but a best friend. Laugh, live and love.

Q&A WITH TYLER ESPARZA
Favorite Holiday: Christmas
Favorite Food: Lasagna
Favorite Pastime: Baseball
Favorite Movie: Avatar
Favorite Music: Pop
Favorite Color: Red
Nickname: Ty
One Word to Describe You: Reliable
Role Model: Derek Jeter
Dream Vacation: Going to New York City and watching the Yankees play baseball
Words of Wisdom: Do unto others as you would have them do unto you.

October 2010

Bryan Pendarvis

“I have career goals, a great family, lots of friends, and a long-time girlfriend.  I’m staying positive.”

“Stay positive and love your life.”  My brother and I loved that lyric from our favorite band, 311, and it is a motto that I try to live by.

We lost my brother, Shaun, on April 1, 2009, when he developed a serious infection more than a year after his successful lung transplant.  He was 27.  Shaun has always been my inspiration because he was always so positive, even when he was feeling horrible.  Because he was older, when I would have treatments for CF, he would have the “been there, done that” attitude.  He would tell me that it wouldn’t be so bad.  He would help me be prepared.  I can’t imagine going through this without having someone else who really understood what it was all about.

I’m 21 years old, and I’m a senior at Southeastern Louisiana University in Hammond.  I’m majoring in biology, and my plan is to go to graduate school and study microbiology; probably, I’d like to work in a microbiology lab.  The way I look at it, CF allows a bacterium, Pseudomonas, to grow in your lungs, and one of the things you can research as a microbiologist is which antibiotics kill bacteria. 

I have career goals, a great family, lots of friends, and a long-time girlfriend.  I’m staying positive.

But it hasn’t always been easy.  Early in my college career, I wasn’t feeling well.  I was exhausted all the time.  I would come home from class, and I had no energy to do anything.  I wasn’t hungry, and I was losing weight.  I would stare at a textbook, and the information just wouldn’t come to me.  I began to have doubts about whether I could handle college, even though I was class valedictorian in high school. 

Of course, doctors thought my symptoms were related to the progression of CF.  I went for tests, but nothing turned up.  Finally, a doctor thought about checking my glucose level — it was close to 600 fasting.  It turned out that I had full-blown CF-related diabetes, and that the lack of insulin in my body meant that my body was literally feeding off itself: I could not get energy from food.  I’m 6’2” tall, and by the time I was diagnosed, I had dropped to 128 lbs.  I was so under-nourished that the doctors wanted to place a feeding tube to supplement my nutrition. 

CF can cause diabetes because it interferes with the operation of the pancreas.  Doctors are aware of it, but it has not been well-known in the CF community until recently because many people with CF did not live long enough for the effect to take place.  Now that we are living so much longer with CF, diabetes is an issue that more than a few adults will confront.

When I started getting the insulin treatments, I felt better immediately.  I had so much energy that I was doing twice what I’d been able to do before.  I’ve regained weight, and I’m doing great now.  I’m back to playing intramural softball, and I’ve been working out at the school gym.  Being active keeps your lungs clearer, and it’s inspiring to see what people like Jerry Cahill can do in their 50s.

One of the lessons I took from my experience is that your doctor can’t know everything about your condition.  It took two-and-a-half years to diagnose my diabetes, and if I had known more about the symptoms, I might have been able to help identify the problem.  Every CF case is different, and each person has different variables.  It’s hard for your doctor to know what’s going on if he or she has a hundred or more patients.  So if you are knowledgeable, you can improve your care.  It’s one of the reasons that I’m interested in microbiology.

I was hospitalized in December 2007 at Tulane University Hospital when my diabetes was diagnosed.  My brother Shaun was at University of Alabama in Birmingham at the same time for his lung transplant. We were on some of the same medications during our recoveries, and he did great.  His lung function was 110% of capacity — I didn’t even know that was possible, but it was because his body had been accustomed to working with inefficient lungs — and he had more energy than ever.  As Shaun’s recovery continued, his creativity burst through in hundreds of paintings.  Then, he went on a camping trip and apparently was exposed to something that caused damage to his lungs.  We thought it was fairly minor like pneumonia, and he just needed antibiotic therapy.  But the pneumonia caused adult respiratory distress syndrome that he could not recover from since he was immune-suppressed from the anti-rejection medications.  The Pseudomonas caused his death, ultimately.

With my diabetes under control, I’m trying to raise scholarship money. One particular scholarship program almost requires campaigning on your campus for recognition, and so I have been reaching out to people in ways that I did not do in the past.  Before, I didn’t bring attention to having CF because I want to be treated as “normal” by everyone.  But the support I have received has been amazing, and it’s great to show people that having CF isn’t the worst thing in the world. 

Also, I’ve been in a trial for a new drug, and it’s phenomenal.  It makes your sweat test results come out as normal — like you don’t have CF.  It’s not exactly a cure, but it’s the biggest thing in CF treatment.  In the next couple of years, I think people with CF will be living far beyond anyone’s expectations.  That’s why I’m staying positive and loving my life.

Family members:  Cindy Pendarvis (mother), Chad Pendarvis (brother), Pat Pendarvis (father)
Favorite Holiday: Halloween
Favorite Food: Steak and sushi
Favorite Activities: Work on cars, bowling, video games, photography, golf
Favorite Sports to Play: Baseball and football
Favorite Movie: Donnie Darko and Kung Pow
Favorite TV Series: Dexter
Favorite Music: Rock
Favorite Band: 311
Favorite Color: Teal
Nickname: B-Pen
One Word that Describes You: Analytical
Role Model: My brother Shaun
Dream Vacation: The Galapagos
Favorite Words of Wisdom: “Stay positive and love your life”

May 2010

Andrea Eisenman

“Recently, I passed the 10-year anniversary of my transplant, and I’m doing things that I never expected to do.”

To be honest, when I was in my teens and early 20s, I wasn’t disciplined about my treatment and my health.  I guess I was resentful that I had to take care of myself in a way that my friends didn’t.  Being compliant and working and trying to have a social life — sometimes it was too much.  I was hospitalized several times for pneumonia, and my prognosis was not good.

In my early 30s as my health was deteriorating, I was placed on the lung transplant waiting list.  I was dependent on oxygen, and I had colds that lasted for two or three weeks.  My lungs were bleeding, and I had hemoptysis frequently.  But even as I struggled, I knew I had to be compliant with my treatments, and I exercised in whatever way I could, usually on the treadmill or by swimming with my oxygen on.

In 2000, at the age of 35, I received a double-lung transplant.  Despite my condition, it wasn’t an easy decision.  There was no guarantee that it would go well, there were a lot of risk factors.  After my transplant, I was in the hospital for 13 days, but I felt elated when I could take a deep breath without coughing.  I hadn’t been able to do that since I was about 10 or 12 years old.

Recently, I passed the 10-year anniversary of my transplant, and I’m doing things that I never expected to do.  I try to do up to an hour-and-a-half a day of anything that’s cardiovascular to keep my lungs clear.  To maintain my health, I go to the gym, swim, play tennis, and go bike riding.  I have been in the Transplant Games twice, and I’ve won a silver and a bronze medal.  I didn’t expect to be able to do these things; I just hoped that my transplant would enable me to get off oxygen and be a little more independent.

One of my inspirations during my toughest years and since has been participating in and serving the CF community.  For many years, I felt isolated because I didn’t know anyone with CF.  It wasn’t until 1997 when I went to a Cystic Fibrosis Research Inc. conference in California that I met people who were living and working with CF.  These were people I could talk to, and they would understand what I was going through.  At the conference, I met a volunteer who worked on the “CF Roundtable” newsletter, and she asked me to join the Board.  I began to volunteer on the publication, which I still do today.  I also volunteer for the New York Organ Donor Network, and I participate in CF walks.

I appreciate every moment I have, and I appreciate the surprises that life sometimes brings.  For example, one day, I was walking my dog, and I met a man at the dog park.  His name is Steve Downey, and we got married in September 2008.

I’m committed to staying compliant because I don’t want to slide back into sickness. 

Favorite Holiday: Thanksgiving. You can eat whatever you want all day.
Favorite Food: Japanese
Favorite Pastime:  Several. I love reading fictional literature and non-fiction. Cooking. I love to go to the movies, and I watch a lot of documentaries.
Favorite Movie: Paradise Lost (documentary)
Favorite Music: REM, Liz Phair, Bob Mould, Led Zeppelin, trip-hop, Olive, Air, Morcheeba, and ‘80s stuff
Favorite Color: Olive
Nickname: Andy
One Word that Describes You: Quirky
Role Model: My mother. I lived with her when I was too sick to be independent, and she’s always been there for me. She has kept me from giving up. She and her parents escaped from the Nazis in Austria, and I think that’s where I inherited my survivor skills.
Favorite Words of Wisdom: Do unto others as you would have them do unto you.
Dream Vacation: Somewhere tropical or in the Mediterranean, where the food is good and I could play tennis and be in the water. No computers.