Revelations of Aging With CF

So, you’re getting older—and maybe this new chapter has been an unexpected surprise. There is so much excitement and opportunity ahead, but it’s also okay if it feels daunting. You’re not alone in this journey. There are lots of other folks trying to figure out what comes next, and the truth is, that path will look different for everyone living with cystic fibrosis (CF). As you look ahead, give yourself the chance to rejoice in the present moment, reflect on your changing needs, and reorient yourself to this new reality.

“If I could talk to my younger self now, I would tell her it’s okay not to know how the story ends. Growing up with a chronic illness can lead to a strong desire to control as many aspects of your life as possible, since your health feels so far out of your control. The truth is no one has a crystal ball to predict what’s next, so it’s important to get comfortable with showing up, doing your best, and then letting go of the rest.”

– Julia, an actress, singer, and advocate living with CF

Reframing your mindset

There is something so special about the way people with CF are able to live in the present moment. Preparing for life beyond the here and now requires a shift that may not feel totally natural at first. It’s important to recognize that every step you’ve made so far has been cumulative and to celebrate the personal growth and achievements you’ve made through the years. Revel in that and begin to embrace a full and meaningful future!

Let go of beliefs that no longer serve you

When life goes a different direction than you anticipated, instead of succumbing to feelings of regret or stagnation, lovingly challenge yourself to step outside your comfort zone. Reevaluate what you want out of life and, without comparing your journey or timeline to others’, decide what steps you need to take to get there. It’s never too late to pursue your dreams!

Lean on your support system

Through the good times and the bad, your loved ones are the people you turn to for comfort, wisdom, and encouragement. As you change, so too do those around you. Continue to grow together as you broach life's big questions, and never be afraid to ask for help when you need it.

Build out your care team

When it comes to managing your ongoing care, make sure to advocate for yourself! Ask questions about your treatment plan, seeking out additional specialists, making changes to your lifestyle, or any other aspects of your care that you think may need to be reevaluated as the years go on. The more open you are with your care team, the better they can provide guidance on managing your CF in a way that’s sustainable for you.

Share your wisdom with younger generations

As someone with a lot of lived experiences, you may find it rewarding to mentor younger people with CF. Look for opportunities to connect through community events, social media, and online forums.

“

A key attribute or skill in life is flexibility and the ability to pivot and pivot quickly. When faced with a different set of circumstances, it's finding different ways to still apply your passion and try to earn a living that way.”

–John, a working parent living with CF

Checking in with your body

Getting older can often come with its own physical challenges, but there are some specific issues to look out for when it comes to CF. It’s important to check in with your care team often—especially if your health begins to change in any way. They may recommend implementing certain screening exams, dietary changes, or other therapeutic mechanisms into your care plan based on your risk factors and medical history (beyond the typical recommendations for older adults who do not have CF).

Consider discussing your risk of the following comorbidities with your  care team:

Cardiovascular disease (CVD)

In the general population, as people get older, certain diets are known to be associated with an increased risk of CVD as well as obesity, hypertension, dyslipidemia, and diabetes. It’s important to talk to your care team about any dietary changes you should make as the years go on to support your changing health needs.

CF related diabetes (CFRD)

CFRD affects about half of adults living with CF and is different than type 1 and type 2 diabetes.

Obstructive sleep apnea (OSA)

Getting a good night’s rest is an important part of managing CF symptoms, so your care team may want to rule out OSA as a contributor of poor sleep.

Liver disease

CF-related liver disease (CFLD) may impact between 3% and 40% of people with CF.

Bone health

CF bone disease (CFBD), mainly caused by osteoporosis, is expected to become more prevalent as more people with CF get older. Since the risk of getting a fracture is estimated to be twice as high in people with CF compared to the general population, it’s important to consider with your care team whether changes need to be made to your routine. There may be some types of physical activity that aren’t recommended if the bones are vulnerable.

Certain cancers

There is emerging evidence of increased cancer risk in adults with CF—especially gastrointestinal cancers like colorectal cancer (CRC).

By now, you’ve probably found certain physical activities, hobbies, and go-to meals that fit your lifestyle. Those don’t necessarily have to change as you get older, but keeping your care team in the loop can provide the reassurance and guardrails you need to keep doing the things you enjoy. Maybe you’ll even want to talk to them about pursuing other hobbies you never tried, but are now ready to resurface!

Preparing for what's ahead

It can be helpful to reflect on what you want and prepared for what you may need. Think about the following prompts as you head into different phases of your life.

Developing your career?

Do I switch paths or stay the course?
Should I consider pursuing a degree or any certifications?
Am I well enough to work full time for the long term or should I consider part time work?
- If you and your care team decide you are not well enough to work a traditional job, discuss whether you are eligible for disability benefits, medicaid, and/or medicare
Does my employer provide benefits to help support my medical needs and/or that allow me to save for the future?
What options do I have to build a career that’s sustainable with my life?

“

Once I graduated with my bachelor's degree, I was super proud of myself. But I knew I wanted more, and I knew that I wanted to go for my master's. And so I made that choice. It took me a while, and in between I needed a break, I needed a break from everything. But once I felt ready, I went ahead and I was just like, okay, it's time for me to pursue my next dream.”

–Maria, a speech language pathologist living with CF

Planning for retirement?

Have I started investing in a retirement fund?
- Talk to your social worker or a financial advisor about investment approaches that work best with your individual circumstances
What resources do I have access to for financial stability once I retire?
Am I eligible for medicare?
How can I ensure continued coverage for my care needs (especially as screening recommendations and treatment regimens continue to change and progress within my lifetime)?

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