http://clubcysticfibrosis.com/index.php/site/index/ Club Cystic Fibrosis en rim50@aol.com Copyright 2010 2010-05-07T16:20:27+00:00 http://clubcysticfibrosis.com/index.php/site/andrea_eisenman/ http://clubcysticfibrosis.com/index.php/site/andrea_eisenman/#When:16:20:27Z “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. 40+ 2010-05-07T16:20:27+00:00 http://clubcysticfibrosis.com/index.php/site/steve_bell/ http://clubcysticfibrosis.com/index.php/site/steve_bell/#When:13:18:28Z “It’s not about the challenges, it’s about your attitude, how you overcome, and what you do with what you’ve learned from that experience.” I was diagnosed with cystic fibrosis when I was three months old.  Throughout my life, there were always obstacles or doubts or challenges.  Some more difficult than others.  But it’s not about the challenges, it’s about your attitude, how you overcome, and what you do with what you’ve learned from that experience.  Whether it is the diagnosis of CF related diabetes, overcoming the daily battle, or walking on to the Ithaca College soccer team, I’m determined, I fight, and I prevail. To stay healthy, I am compliant with my treatments and exercise five to six days a week. I enjoy playing soccer and running. I ran the 2009 New York City Marathon and finished in 3:57, achieving my goal of a sub-four-hour marathon.  Another example of how if you put your mind to something there’s nothing that can stop you. Today, I’m 26.  I’m happy, I’m healthy, I’m living life to the fullest. 20+ 2010-05-06T13:18:28+00:00 http://clubcysticfibrosis.com/index.php/site/kayte_tranel/ http://clubcysticfibrosis.com/index.php/site/kayte_tranel/#When:14:59:22Z “Although I cannot control many aspects of my life, I have a desire to work hard and focus on the things that I am capable of achieving.” I am on a mission to use the talents and abilities I’ve been given to their greatest potential.  Although I cannot control many aspects of my life, I have a desire to work hard and focus on the things that I am capable of achieving. I’ve been blessed with some athletic ability, which complements having cystic fibrosis.  My goals as an athlete give me motivation to be compliant with my CF therapies.  At the same time, being an athlete has become a major component of my care plan, and it has significantly improved my disease outcomes and quality of life. Finally, I have a passion for learning, and fortunately, health behavior is a growing area of research with plenty left to discover.  I am on a mission as a student and professional to help others value their health and wellness. Favorite Holiday: Christmas. It includes my favorite things: family, a much-needed break from school, and my favorite foods—peanut brittle, sugar cookies, mashed potatoes and stuffing. Favorite Food: Mashed potatoes—they go with anything. Role Model: Several. My mom epitomizes strength and the ability to endure and overcome challenges. My boyfriend, Lucas—his patience and understanding are qualities that I strive to emulate. Abby, my sister, because she fearlessly welcomes challenges. Finally, Brett Favre, because he does what he loves, appears to be a strong leader and doesn’t allow others to place limits on what he is able to achieve. Dream Vacation: Riding my bike (pedal-powered, that is) across a state that I haven’t visited. It sounds crazy, I know, but I enjoy activities that are physically and mentally challenging, plus I value opportunities to see places I haven’t been able to before. Fun Fact about You: I’m a crazy dog lady. I have two Schnauzer mixes, Chance and Millie, who I spoil beyond measure.  Chance LOVES to run with me, while Millie prefers to enjoy naps on the couch where she can keep my feet warm. They are THE BEST! You can find Kayte on ... Facebook 20+ 2010-05-05T14:59:22+00:00 http://clubcysticfibrosis.com/index.php/site/don_warner/ http://clubcysticfibrosis.com/index.php/site/don_warner/#When:14:49:59Z “You never completely get over the loss of a child. You learn to live with a broken heart, and you try to stay connected to family and friends.” I think every family who has a child with CF goes through a time when they have to decide if they want to be public about it — who they want to tell and how involved they want to be with the CF community. Many kids don’t want to be defined by CF or be treated differently. That’s how our daughter, Angela, felt about it. So, Angie had a “normal” life. At least, it was as normal as it could be. Kids with CF humble me with their discipline and courage. Sure, Angie was discouraged sometimes, but I never got the sense that she felt life was unfair. For most of her life, Angie thrived. After being diagnosed with CF at three months of age, she was not hospitalized again until she was 18. In high school, she was a cheerleader, an honors student, and had an active social life. We worked with wonderful caregivers at the University of Minnesota. Dr. Warren J. Warwick believes in a very structured approach. He says, “You’re always in preventative mode. Don’t skip therapies, even when you feel well.” My wife Linda and I followed his advice. I was up at 5:30 a.m. every day to get Angie’s 60-minute therapy done, and we had a similar routine every evening. If she had a cold or more, we did therapy sessions three to four times per day. We lost Angela at age 21 in 2003. She had complications with a bowel obstruction that resulted in surgery. Within hours of her surgery, she developed a sepsis infection that spread to her lungs. We stayed with her for 86 days in the ICU, with her on a ventilator and heavily sedated. Family and friends came daily to show their support and love. During and after that experience, I decided that we would not keep a low profile any more. In 2003, we started the Angela Warner Foundation to support CF research. We started the Angela Brooke Warner Scholarship Endowment at the University of Minnesota in 2005. In 2008, we completed the Angela Warner Children’s Memorial and Prayer Garden at Gethsemane Cemetery in Minneapolis, Minn. It is a place comfort and peace for people who have lost a child and has a special area of dedication to those who have lost their battle with CF. When Angela was diagnosed with CF, our world changed forever. But we had a full life, too. Angie was her mom’s best friend, and Angie and I shared a love of sports and enjoyed our special walks along Laguna Beach in California. Angie was a wise soul, and during those walks over the years, we would talk about the stars above and the ocean life below. As she matured, we also shared thoughts on life, mortality and eternity. You never completely get over the loss of a child. You learn to live with a broken heart, and you try to stay connected to family and friends. That’s why I wrote a book, Walks on the Beach with Angie: A Father’s Story of Love, about our experiences. It details her 86 days in the ICU, but it primarily tells Angela’s remarkable story. Finally, the book shares our reflections on coping with enormous loss and how to move forward with life. I hope that it can help other families who are facing the similar challenges. For more information about our activities in the CF community, please go to www.angelawarnerfoundation.org. Favorite Food: Italian Favorite Holiday: 4th of July Favorite Pastime: Fantasy Baseball Favorite Movie: Godfather I and II Favorite Music: Neil Diamond Favorite Color: Blue One Word that Describes You: Goal-Oriented Role Models: Ronald Reagan and Sir John Templeton Words of Wisdom: The Serenity Prayer Dream Vacation: Month touring French and Italian wine countries You can find Don on: Thinking about it caregivers 2010-04-30T14:49:59+00:00 http://clubcysticfibrosis.com/index.php/site/joan_finnegan_brooks/ http://clubcysticfibrosis.com/index.php/site/joan_finnegan_brooks/#When:02:19:38Z “I have never viewed CF as a burden.” I am 49 years old, and I grew up in Sleepy Hollow, N.Y.  Born with CF in 1960, I was given less than 10 years to live.  My mother and father instilled independence and responsibility in me at a young age, and I learned to do all of my therapies and take care of myself by the time I reached high school.  I have never viewed CF as a burden; it is something that is built into my every day routine. Exercise is one of the most important factors in my life and staying healthy with CF.  I discovered the wonders of exercise in high school while playing field hockey.  As a result of all the running on the field, my lungs would clear and I could breathe easier.  Since then, I have run – I’ve completed a marathon and several half-marathons.  I also enjoy dancing and cycling. I attended Brown University and graduated with a degree in economics.  I live in the Boston area with my husband of 20 years. I work full-time, managing my own consulting practice.  I also volunteer for the Cystic Fibrosis Foundation, as giving back to the community is very important to me.  For 49 years, I have successfully managed CF and remained optimistic the entire time.  I intend to possess that attitude well into the future. Favorite Holiday: Christmas Favorite Food: Mashed potatoes Favorite Pastime: Sudoku Favorite Movie: It’s a Wonderful Life Favorite Color: Green Dream Vacation: Italy You can find Joan on … Facebook 40+ 2010-01-06T02:19:38+00:00 http://clubcysticfibrosis.com/index.php/site/kurt_kimmerman/ http://clubcysticfibrosis.com/index.php/site/kurt_kimmerman/#When:18:03:07Z “If I am studying, I use my treatments as a study break.  Or if I am hanging out and watching a movie, I will put my vest on.” I am 21 years old and was born in Pittsburgh, Penn.  When I was young, my family moved to Denver, Colo., but we eventually settled in Sacramento, Calif.  I was diagnosed with cystic fibrosis at the age of seven after my mother discovered I had nasal polyps.  Growing up, I was always compliant with my treatments, and I enjoy biking to stay healthy.  I currently attend the University of California - Los Angeles, where I am studying rocket science.  I intend to graduate and perhaps pursue a career at NASA.  While I have a busy schedule at school, I still make time to for my treatments.  For example, if I am studying, I use my treatments as a study break.  Or if I am hanging out and watching a movie, I will put my vest on.  Some of my hobbies include hanging out with friends, skiing, watching movies and of course, my passion; rockets.  I am in the Rocket Club at UCLA, and intend to get an internship in this field while continuing to pursue my degree in rocket science.  Favorite Holiday: Christmas Favorite Food: Sushi Favorite Movie: Apollo 13 Favorite Color: Green Role Model: Parents Dream Vacation: Skiing in the Canadian Rockies You can find Kurt on … Facebook 20+ 2009-12-10T18:03:07+00:00 http://clubcysticfibrosis.com/index.php/site/dan_palumbo/ http://clubcysticfibrosis.com/index.php/site/dan_palumbo/#When:17:55:37Z “Music continues to be a large part of my life, and I currently play the guitar and keyboard and enjoy writing.” I was diagnosed with cystic fibrosis at birth and given one year to live.  For 53 years, I have continued to beat that diagnosis.  Growing up in Dupont, Penn., CF did not determine who I was. As a child, my parents got me involved with sports and exercise, similar to my peers.  They also introduced me to the drums, which raised my interest in music while allowing me to move about and exercise.  Music continues to be a large part of my life, and I currently play the guitar and keyboard and enjoy writing.  I attended school at Kings College and upon graduation, I founded an ad agency called Dan Palumbo Advertising.  I have been working for 30 years doing a range of advertising that includes television, radio and printing.  I am married and have two wonderful children who both went to college and law school.  I stay compliant with treatments so I can live life to the fullest and take care of my family.  Due to digestive problems, I always eat healthy and continue to exercise on the treadmill every week.  When I decide to retire, I would like to focus my efforts on volunteer work and raising awareness for cystic fibrosis.  Favorite Holiday: Christmas Favorite Food: Italian Favorite Pastime: Music Favorite Movie: Tommy Boy Favorite Color: Blue Dream Vacation: Italy with family You can find Dan on … Facebook 50+ 2009-12-10T17:55:37+00:00 http://clubcysticfibrosis.com/index.php/site/casey_flaherty/ http://clubcysticfibrosis.com/index.php/site/casey_flaherty/#When:14:41:23Z “In completing the [New York City] marathon, I proved that CF will not prevent me from achieving my goals.” I am 26 years old living in New York City.  I am currently a full-time nursing student at CUNY Hunter in Manhattan.  I decided to pursue nursing after meeting so many wonderful nurses during my experiences in and out of the hospital, and it is a career that that will allow me to take care of others but also to dedicate time to my own health To keep in shape, I enjoy yoga and running outdoors.  I recently ran for Team Boomer in the ING NYC Marathon and completed the race in 4:23:17.  In completing the marathon, I proved that CF will not prevent me from achieving my goals.  I also hoped that by running, I was able to inspire others with CF to take on a goal that will improve their health. For me, running is the most effective form of airway clearance possible.  I continue to exercise every day to remain healthy, and I encourage all people with CF to get out there and clear their lungs through exercise.  I am fortunate to have a wonderful family and support system, and I am enjoying life while pursing my nursing degree. Favorite Holiday: Christmas Favorite Pastime: Running Favorite Food: Pizza Favorite Movie: Love Actually One Word that Describes You: Determined Favorite Color: Green Dream Vacation: Bora Bora You can find Casey on … Facebook 20+ 2009-12-01T14:41:23+00:00 http://clubcysticfibrosis.com/index.php/site/victor_roggli/ http://clubcysticfibrosis.com/index.php/site/victor_roggli/#When:20:54:09Z “Never give up.” I was born in Winchester, Tenn., in the spring of 1951. As a child, I had trouble gaining weight and was often in poor health — fighting off bouts of pneumonia. It was not until 1963, when I was 12 years old, that I received a sweat test at Vanderbilt University Hospital in Nashville and was diagnosed with cystic fibrosis. My parents’ decision to let me play sports growing up kept my lungs in shape and promoted airway clearance. While attending undergraduate school at Rice University, I remained active by participating in intramural sports, such as flag football and basketball. Attending medical school at Baylor College of Medicine in Houston, Texas, to become a lung pathologist, I was fortunate to have access both to the most up-to-date treatment modalities and opportunities for early intervention when problems arose. Now, at 58 years old, I continue my research as a lung pathologist and professor at Duke University Medical Center in Durham, N.C. I am staying compliant with my medications but struggling to find time to exercise. With the support of my wife, daughter and two stepsons, I hope to get back to some of the activities I enjoyed in my youth. Since I turned 50, I look at each day, week, month and year as a gift, and it is my practice to live with an attitude of gratitude. I have also found that sharing my story with CF families or the freshman medical school class at Duke is not enough. I have written a book called “So Far, So Good: Living and Coping with Cystic Fibrosis” that is unpublished and still needs editing. My goal is to complete and publish the book, and give all the proceeds to CF research. I am proud to say that I have not let CF stand in the way of my dreams and I am continuously thankful for the gifts that each day brings.    Favorite Holiday: Halloween Favorite Food: Butterscotch frozen yogurt Favorite Pastime: Karaoke (I love singing, and it helps clear my airways) Favorite Color: Periwinkle blue Role Model: My teacher from Baylor named Don Greenberg — he was a world famous lung pathologist Dream Vacation: Hawaii You can find Victor on … Jerry Cahill’s podcasts (www.jerrycahill.com) 50+ 2009-07-16T20:54:09+00:00 http://clubcysticfibrosis.com/index.php/site/paul_drury/ http://clubcysticfibrosis.com/index.php/site/paul_drury/#When:15:05:24Z “Live in the now.” Born in Chesire, Conn., with five older brothers and sisters, I was diagnosed with CF at the age of two. Growing up, I had a normal, active childhood with the “usual” cleanouts — playing sports like baseball, golf and hockey in high school. When I began attending the University of Connecticut in the late 1980s, I found adjusting to college life very difficult. I was very private about having cystic fibrosis and avoided telling my friends, so as not to be treated differently. During my first semester at school, I got pneumonia. My lung collapsed three times during my second semester, resulting in one of my lungs being glued to the inside of my chest in an attempt to prevent a future collapse. However, my other lung collapsed, forcing me to miss a full year of school at UConn and to return home. Although it was a struggle, spending the year at home turned out to be a blessing in disguise. In November, my dad passed away after a heart attack. That spring and fall with him at home, watching the Red Sox go to the World Series, provided me with memories that I still cherish. After I graduated from UConn with a degree in economics, my condition worsened, causing me to receive a double-lung transplant.  Following my transplant, I created a marathon golf event as a volunteer for the Cystic Fibrosis Foundation. In 1996, I was put on the CFF staff and have since become the Director of Special Projects and the Executive Director of the Connecticut chapter.  Now, at the age of 43, I have learned that living with CF has given me a unique perspective on life, one that has taught me to live in the moment and never lose hope. I currently live in Plantsville, Conn., with my wife and two dogs — taking one day at a time and always maintaining a positive outlook on life. Favorite Holiday: Thanksgiving Favorite Food: Chicken Favorite Pastime: Painting (pointillism is my specialty!) and the Boston Red Sox One Word that Describes You: Witty Role Model: My mom Dream Vacation: Alaska (I traveled there with Boomer!) A Fun Fact about Paul: My wife, Ivona, bought me at a CF bachelor bid in 1998.  We have been together ever since. You can find Paul on … Facebook 40+ 2009-07-16T15:05:24+00:00