http://clubcysticfibrosis.com/index.php/site/index/ Club Cystic Fibrosis en rim50@aol.com Copyright 2011 2011-09-29T16:27:02+00:00 http://clubcysticfibrosis.com/index.php/site/josh_mogren/ http://clubcysticfibrosis.com/index.php/site/josh_mogren/#When:16:27:02Z “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/) 30+ 2011-09-29T16:27:02+00:00 http://clubcysticfibrosis.com/index.php/site/keith_connolly/ http://clubcysticfibrosis.com/index.php/site/keith_connolly/#When:19:22:58Z “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 20+ 2011-08-31T19:22:58+00:00 http://clubcysticfibrosis.com/index.php/site/elizabeth_clark/ http://clubcysticfibrosis.com/index.php/site/elizabeth_clark/#When:18:56:40Z “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 caregivers 2011-08-01T18:56:40+00:00 http://clubcysticfibrosis.com/index.php/site/david_wagner/ http://clubcysticfibrosis.com/index.php/site/david_wagner/#When:19:15:24Z “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 30+ 2011-07-31T19:15:24+00:00 http://clubcysticfibrosis.com/index.php/site/valerie_batz/ http://clubcysticfibrosis.com/index.php/site/valerie_batz/#When:19:37:20Z “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 50+ 2011-06-01T19:37:20+00:00 http://clubcysticfibrosis.com/index.php/site/kay_wharton/ http://clubcysticfibrosis.com/index.php/site/kay_wharton/#When:20:50:00Z “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)   50+ 2011-05-16T20:50:00+00:00 http://clubcysticfibrosis.com/index.php/site/sandra_kindel/ http://clubcysticfibrosis.com/index.php/site/sandra_kindel/#When:20:42:29Z “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 ... caregivers 2011-05-16T20:42:29+00:00 http://clubcysticfibrosis.com/index.php/site/karen_vega/ http://clubcysticfibrosis.com/index.php/site/karen_vega/#When:20:21:07Z “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 30+ 2011-04-04T20:21:07+00:00 http://clubcysticfibrosis.com/index.php/site/brian_johnson/ http://clubcysticfibrosis.com/index.php/site/brian_johnson/#When:20:00:56Z “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 30+ 2011-03-31T20:00:56+00:00 http://clubcysticfibrosis.com/index.php/site/dottie_lessard/ http://clubcysticfibrosis.com/index.php/site/dottie_lessard/#When:19:52:48Z “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 40+ 2011-01-21T19:52:48+00:00