Club CF 40+

People with CF who are LIVING, BREATHING and SUCCEEDING at 40+ may be very stable in their career. They may be getting promoted or slowing down a little to take care of their health. As therapies increase, striking a balance between treatments and work is important so they can enjoy life!

Family life and their children’s education are important, as is maintaining their health through compliance and exercise. They also may be preparing for a double-lung transplant so they can start a new life post-transplant.

If you are one of the many people LIVING, BREATHING and SUCCEEDING with CF, we want to hear from you! Show the world what you have done!
Click here to submit your story. All applicants will receive a CLUB CF t-shirt.

December 17 2013

Nicki Perkins

“Get busy living or get busy dying.”

I was not diagnosed with cystic fibrosis until I was four years old – and it shocked my entire family completely because no one else had ever had the disease. I know that my parents struggled with guilt over it for a long time, but I never blamed them; cystic fibrosis is just a part of who I am.

As a child, I was never coddled; my parents insisted I play any and every sport available to me, and my medications and treatments were always nonnegotiable. I am so fortunate to have parents and family who support and encourage me to live my life as normally as possible. Because of this support, I played basketball, volleyball, track, softball, and badminton, and was more often than not captain of my team.

Cystic fibrosis has definitely made my life different than that of the average person. For example, dating was always a daunting process. When I met my husband, I had to explain my disease and all that it entails, including the probability that I will never have children. My disease has also made traveling harder than normal. I always have to be completely open with those friends and family with whom I am traveling about my medications and other treatment and exercise routines.

In spite of the difficulties, I have had many, many happy experiences. I recently started doing cross-fit six to seven days a week, and was able to do my first ever hand stand push-up, an accomplishment I never thought I would achieve! I also just found out that, after raising over $600,000 for the University of Calgary, they are naming their CF lab after me – an honor I am proud to have. By never taking a day off of my treatments and by exercising regularly, I have been able to accomplish things that I never thought possible and plan to reach even more goals in my future, like graduating from law school. Life may not be fair, but it is just as unfair for me as any other person, so I refuse to let me disease stop me from reaching my dreams.

Color… pink
Food… French fries
Holiday… Christmas
Movie…. Shawshank Redemption
Musical artist…. Jason Mraz
Sport… basketball
Athlete… Jarome Iginla

If I could visit anywhere in the world, I would travel to Asia.
If my family and friends had to describe me in one word, it would be ambitious.
My role model is my friend Diane, who is a 50-year old transplanted CF patient.
If I could give anyone recently diagnosed with CF any advice, it would simply be to play sports.

February 20 2011

Lisa Agostoni

“People often speak of living a normal life, but normal is relative. What may seem unmanageable for one person is the routine of another. I know my purpose. I know my normal. Do you know yours?”

I was diagnosed with cystic fibrosis in the 1970s, a time when there was little in the way of advanced medical treatments and very little hope. My parents, both medical professionals, chose not to listen to the doctors’ negative prognoses but decided to make my life as normal as possible. They taught me to be compliant with my treatments and medications – to make them a habit instead of a chore – and encouraged me to be physically active. By the time I was twelve, I participated in gymnastics, jazz, tap, and ballet, and saw medical treatments as an average daily activity. Because of my compliance and my physical health, my doctors increased my “expiration date” to twenty-one years old.

Twenty-one is a milestone year for everyone, but was a bittersweet year in my life. I had to have aggressive medical treatment for a respiratory infection for the first time in my life. I recovered, moved past my “expiration date,” and continued living my life the way I always have – medically compliant and physically active.

After I moved to Atlanta is my early 20s, I added tennis to my list of sports I enjoyed and played to stay physically fit. Several years later, I discovered yoga as a way to improve my tennis game and to manage anxiety. I quickly discovered that the rhythmic flow of vinyasa and pranayama help increases my breathe capacity – an issue with which all CF patients struggle. 

My love of yoga has grown over the years and so has my commitment to it. I passed my 200 hour teacher certification and am putting it to use around the Smyrna, Georgia area. I love teaching other how to achieve inner stillness and to balance their breath. Yoga is now a part of my daily compliancy routine – my way to stay healthy and balanced.

I am an interactive marketing manager during the day, a yoga teacher and blogger at night and on the weekends. I am inspired every day and am grateful for every breath I take. People often speak of living a normal life, but normal is relative. What may seem unmanageable for one person is the routine of another. I know my purpose. I know my normal. Do you know yours?

January 03 2011

Marsha Sible

When I was diagnosed with cystic fibrosis at one year old, the doctors told my parents that I would live to be 14. In spite of this prognosis, my parents always made me feel as normal as possible. I grew up in Pittsburgh, Pennsylvania, leading a typical life. I had a small group of very close friends and was even voted to Prom Court my senior year! I loved art classes and writing and even ran track for a year. As I got older, I realized how important medical compliance and exercise are to staying healthy. Today, I practice stretching from the Miranda Esmonde-White program, resistance workouts, and walk my two adopted dogs daily. Even though climate has a significant impact on my health, I try to exercise no matter what that weather is like.

My most difficult day with cystic fibrosis came when I was admitted into the hospital with a partially collapsed lung. I had been there for a few days, constantly listening to the doctors going back and forth with treatment ideas, but never having them speak with me. Eventually, I became more outspoken about my treatments, researched other hospitals, and made my own appointments. One thing that I have learned from my CF is to be outspoken, knowledgeable, and involved in my own treatments.

I am now 46 years old and married to the love of my life, with whom I have two adopted sons. Because of the difficulties we went through with the domestic adoption process, we decided to proceed with an international adoption. We traveled to Siberia twice, where we adopted Yuri and Alec, brothers who are 15 months apart. I am now writing a non-fiction novel entitled “Irish Twins from Siberia,” which tells the story of our adoption experience. 

I just want to tell all people affected by cystic fibrosis to always hope for the best, expect the worst, and know that things will fall in between. Never live in denial of the disease – accept it, and be aware and reasonable – and always think to yourself that you can’t quit livin’.

My favorite color… blue
I would love to visit… Italy
My favorite food… Italian
My favorite holiday... the anniversary of my family – October 20
My favorite movie… Blindside
My favorite musical artist… Lenny Kravitz
My favorite sport… Steelers football
My family and friends would describe me as… thoughtful
I admire… my parents, who have been married for 50 years

May 02 2010

Andrea Eisenman

To be honest, when I was in my teens and early 20s, I wasn’t disciplined about my treatment and my health. Looking back, 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 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 it would go well; there were many risky factors. After my transplant, I was in the hospital for 13 days, but felt elated when I could take a deep breathe without coughing. I hadn’t been able to do that since I was about ten years old.

Recently, I passed the ten-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 of anything cardiovascular every day to keep my lungs clear. To maintain my health, I go to the gym, swim, play tennis, and bike ride. I have been in the transplant games twice, and have won the silver and bronze medal. I never expected to be able to do these things; I just hoped that my transplant would enable me to get off of oxygen and be a little more independent.

One of my inspirations during my toughest years 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 attended a CFRI conference in California that I met other people who were living and working with CF. These were people I could talk to, who would understand everything 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 NY Organ Donor Network, and I participate in CF walks.

I appreciate every moment I have and the surprises that life brings. For example, one day I was walking my dog in the park, met a man named Steve, and we married in September 2008.

I am committed to staying compliant because I never want to slide back into sickness.

March 24 2010

Dottie Lessard

“To truly live life fully, we must do the things we believe we cannot.”

My life has been a nonstop journey of repeatedly beating the odds set before me. I was diagnosed with cystic fibrosis at 6 weeks old and was not expected to make it past 2 years of age. But, with the support of my family and their encouragement of my athletic abilities, I was able to overcome my negative prognosis and am living today successfully and happily.

In spite of my dedication to athletics, I had to be placed on the transplant list in 1992. I remained on the list for two years, a time during which I strengthened my body as much as possible to increase my odds of survival post-surgery. I finally had my transplant in 1994 and my life has improved exponentially since the surgery.

Since the transplant, I have won several gold medals in the US Transplant Olympic Games, have carried the Olympic torch through Boston, and have even been recognized as one of Boston’s Exceptional Women of the Year. I have been fortunate enough to have been featured on HBO Real Sports and have even been given Runner’s World Magazine’s prestigious Heroes of Running award.

Because children with CF inspire me to better myself every day, I founded a nonprofit called Dottie’s Dream that provides home exercise equipment and swim or gym memberships for children who have CF and/or are waiting for a transplant. I know how important exercise is for living with and overcoming the disease and it is my goal to provide the opportunity to as many children as possible to maintain a healthy life style.

Of all of my accomplishments, I am most proud of be the mother of my son Liam and to be a trailblazer for all those with CF. My goal is to be around for my son for a very long time and to teach him the importance of positivity and inner strength. I truly, truly believe that eventually there will be a cure for cystic fibrosis, but until that time, I plan on staying fit, remaining healthy, and living my life to the fullest every single day.

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