A New Dream for Cystic Fibrosis – Enjoying the “Golden Years”
We are witnessing the potential benefits of a new generation of cystic fibrosis drugs. And one of the big benefits is an increased life expectancy for CF patients. This is opening up whole new dimensions in the lives and futures of cystic fibrosis patients – including the prospects of living to a “ripe old age”.
The past vs the future of cystic fibrosis
Before the 1980’s, only about half of the people with cystic fibrosis lived into their 20’s. Given such a short expected lifespan, many CF patients did little or no planning for the future. Attending college, planning a career, raising a family, and saving for retirement sometimes seemed to have little relevance to a person living with CF.
In the decades since the 1980’s, great strides have been made in the understanding and treatment of cystic fibrosis. Given these advances, experiencing college, career, family, and eventually “retirement” may be more than just wishful thinking. It may well be a dream that comes true for many CF’ers.
Building a life
Going to college
Many resources are available to help CF patients considering a college education. Many colleges have a special department to assist students who may need special accommodations. Favorable housing arrangements, bathroom access, convenient parking, and flexibility in completing coursework can be arranged. And special scholarships may be available for CF patients. In my daughter’s case, scholarships offered by the manufacturers of CF medications helped pay for the first two years of college.
Growing a career
A satisfying career is another improved dimension in the life of a CF patient. As with many life decisions, of course there are practical considerations to be made – daily work hours, work location (is working from home an option?), commuting time, medical benefits and sick time policies, and how much information about your CF condition you decide to share.
My daughter has been fortunate to work in supportive corporate cultures, and she found it helpful to be open about her CF challenges early in her career. Most importantly though, a CF’er should not feel constrained in considering any career that appeals to them.
Having a family
Having a family is completely possible now with CF. Although my daughter has not yet crossed that threshold in her own life, I do believe that this dimension should not be ruled out simply because you are living with CF. Of course it is a complicated decision, but if it is truly a dream of yours, consult your medical team and openly discuss the feasibility and risks.
Looking into the future of cystic fibrosis
Planning for retirement may seem a strange concept for many CF patients. However, with extended lifespans becoming a reality, this area deserves some consideration. It may feel daunting to some, but this doesn’t have to be complicated. There are some simple things you can do to get started.
Consider working with a financial planner to clarify your goals and develop a plan to achieve them. If you have a retirement savings plan, contribute what you can afford. If you have a high-deductible health plan, consider a Health Savings Account (HSA) to save tax-free for future health expenses. And do some dreaming (because you can!) about what your ideal lifestyle might be when you reach those “golden years”.
None of this should make us complacent in our battle with CF. We should not underestimate the seriousness of a life complicated by CF. But it is encouraging that more and more CF’ers will live longer and longer lives. And someday they too could be enjoying some “golden years”. What a wonderful thought!
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