Did you know that your version of Internet Explorer is out of date?
To get the best possible experience using our website we recommend downloading one of the browsers below.

Internet Explorer 10, Firefox, Chrome, or Safari.

Skip To Content
Volunteer Advocate
cf insights cf insights

Living life to the fullest with CF

People from our community with cystic fibrosis may have challenges (transplants, CF-related diabetes, hospital stays…) but they have never let living with CF get in the way of living their lives to the fullest. They are travelling, some are working, others are getting married or having children. Here is what living life to the fullest means for members of our CF community:

-“Great question! “Living life to the fullest” means many different things to many different people.  Every CF patient’s situation is so different that it is hard to give one answer. For me, it was pushing myself to do what I could, when I could, within my physical (and financial) capabilities. When I was born (1960’s), the median life expectancy for someone with CF was 4 years old. The emphasis/expectations for CF patients and their life was to adhere to medication and treatment regimens (many pills, antibiotics, inhaled meds and physiotherapy) and to stay as healthy as possible.  As you can imagine, this consumed a huge part of life for CF patients and their families. As time passed and medical advancements improved the treatment options available for CF patients, we were encouraged to be active, exercise and live as normal a life as possible. Now the estimated median age of survival is 53! I attribute my outlook on life to my parents who treated me like I was a “normal” child.  It was always taken for granted that the priority was to take your medications, treatments, etc., but other than that my parents encouraged me to be like any other child. Taking this outlook on life into my adult years has given me a zest for life and all that it has to offer. This attitude, and a very healthy dose of stubbornness, has seen me through many of life’s situations, including a double lung transplant in 2003. I travel, volunteer, garden, work full time and enjoy a very busy life! Even now, I still have very vivid memories of what life was like before transplant. The hardships, the pain, the disappointments. But, being able to see the silver lining in these situations makes you a stronger person. Having said that, enjoy life, take pleasure in the small things and challenge yourself to do what you can, when you can.  You cannot measure your success and happiness against anyone else because you are a unique individual and only you know what will make you truly happy. Now go out there and live your life like there is no tomorrow!“ – Brenda Chambers

– “To live life to the fullest with cystic fibrosis means the same to me as it does to many others, with or without CF I assume. Proper and diligent self-care enables rich life experience (even in the smallest things) and fulfillment for me. I believe everyone has something going on behind the scenes – everyone. I chose not to share my CF diagnosis, level of care and anxiety for a very long time. I share very openly now. “Before you criticize a person walk a mile in their shoes.”  No one knows what tomorrow holds. I take this to heart and try to live every day, see simple joys and share kindness with others.” – Alex McCombes

-“Living life to the fullest while living with CF can mean a lot to a lot of different CFer’s, but for me it means to never waste a moment of my day wherever possible. It means pausing and reflecting on all the good things I already have, taking a moment to look toward tomorrow and its unknown adventures. “ – Tim Vallillee

-“Life with a chronic illness can be all-consuming and it becomes very easy to dwell on what you can’t do, rather than what you can. I have learned that living life to the fullest is whatever I want it to be. Whether it’s graduating high school, college, buying a home, getting married and starting a family, or simply maintaining your daily regiments of medications and appointments…everything is worth something. We need to remember that we are just as deserving as everyone else for our happy endings, we just have to go through a lot more to get there, but when we do the victory is even sweeter.” – Meaghan MacRury

 

For Alex, Meaghan and everyone else affected by CF, help them live longer and healthier lives by signing and sharing our online action: https://bit.ly/2FxZuCl