Life Planning When You or Someone You Love Has CF

Although I wasn't sure that I'd still be thriving and working at the age of 44, I was fortunate enough to have people who encouraged me to plan for the future despite my CF diagnosis. That's why I'm pleased to introduce a new resource available from the Cystic Fibrosis Foundation.

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Jen Weber, J.D.
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I have a “YOLO” tattoo. Not that I need to be reminded that “you only live once,” but when I see it, I am reminded of soaking up the present, of enjoying every moment, right now. YOLO is about living life to the fullest. When you live with cystic fibrosis, you learn a lot about trying to live life to the fullest. You also learn that living with CF means planning.

From a young age, you plan around breathing treatments and pills. As you experience other common issues associated with CF -- adding IV antibiotics, G-tube feedings, and hospitalizations -- planning becomes even more crucial (at least it was for me)! By the time I was in college, planning meant ensuring I had enough oxygen tanks to get to both class and social activities.

Planning helped me feel in control and accomplish my goals -- to go to grad school, pursue a career, travel, and enjoy hobbies that are personally rewarding. When I was in my 20s, I wasn't sure what my future would be like, but am so glad I began putting funds in an IRA and purchased my life insurance through my employer.

What I recognize now that I am older -- 44 years old and seven years post-lung transplants (yep, two!) -- is that planning is a tool I still use. I think we sometimes believe we become pros at managing our CF and don't need to plan. In many ways, that may be true. But much like I turn to CF clinic (and now my transplant team) for plans to support my health when I am doing well, I recognize that planning remains essential in all parts of my life.

That's why I was so pleased to be asked to review "Life and Estate Planning When You or Someone You Love Has Cystic Fibrosis," a new resource from the Cystic Fibrosis Foundation. It helps those living with CF and their loved ones create the right plan and think through important issues -- explaining how to easily assemble the necessary papers, people, and financial resources so you and your loved ones are prepared.

As 2018 is just getting underway, I think it's the perfect time to get organized and check this resource out -- I'm so glad I did. I hope you find the Life Planning publication helpful.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Jen is an attorney with the Office of Judicial Administration at the Indiana Supreme Court who works in the Personnel and Operations Division. She was diagnosed with CF at the age of 2 and a half, and received double lung transplants at the ages of 36 and 38. Jen is a graduate of Bradley University, and received her J.D. at the Indiana University Maurer School of Law.   She began volunteering with the CF Foundation when she was 10 years old as an “Ambassador of Courage” and continues to serve as a board member with the Indiana Chapter of the Foundation. In Jen's spare time, she enjoys playing the cello, traveling, and doing anything that gets her exercising outside on a sunny day.

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