Ask The Advocates: What Lifestyle Changes Has Cystic Fibrosis Caused?
We asked our advocates, "What changes have you had to make to your life/lifestyle because of cystic fibrosis?" Here's what they wanted to share with you.
Some things take longer
Response from Cheriz K
I find cystic fibrosis influences almost every aspect of my lifestyle, but I overcome any obstacle and I’m stronger for it. For example: in college, my CF affected the amount of time and energy I had to get everything I needed done. I took many medical withdrawals due to surgeries and hospitalizations. This turned my four-year degree into a seven-year journey. But I kept at it and got my four-year degree.
CF has also really affected my career and family life. After a couple years working, I realized I couldn’t keep up with 9-5 P.M. demands of a typical job. This led me to explore other paths. I have my Real Estate license and currently work in social media management and freelance blogging from home. This career has made parenting also easier.
Due to my CF and other medical problems, I’m unable to have biological children. But after fostering for the last two years, I’m thankful life led me down this path. So even though I have had to work harder and longer for my goals, it makes success all the sweeter.
Adjusting for new symptoms
Response from Kenny Boutot
I’ve largely managed to maintain my lifestyle. Recently the biggest changes I’ve been going through have been related to hemoptysis, cystic fibrosis-related diabetes, and Trikafta. Due to my frequent hemoptysis, I greatly reduced my exercise, which has had a broad effect on my general mood and energy level. It also led to me purchasing an expensive bed that can elevate and let me sleep vertically to reduce the risk of bleeding at night.
CFRD has been creeping up on me for years. While I have progressively been improving and adjusting my diet, I’ll soon be at the point where I’ll need to start taking insulin to manage it, in addition to further reducing my sugar intake and trying to increase my exercise regimen. Thanks to Trikafta, I’m seeing less hemoptysis and much more tolerance to exercise, which I’m looking forward to getting back into. This is leading me to seek a change in my work lifestyle to allow more time for the gym daily.
Making health a priority
Response from Janeil Whitworth
Just this past year, I made a big transition to becoming a stay-at-home-work-from-home-mom to better focus on my health. It’s been great to have the flexibility to develop a schedule that allows me to get in extra airway clearance, rest, and stay on top of the clerical duties of managing CF - all while watching my sweet son.
I know that each day I can put my best effort forward to prioritizing my health. My lung function, weight, and energy have improved because of this lifestyle change. Success! The one downside to working completely from home as an extrovert is I need to be really intentional about getting my fill of social interaction. Two-year-olds are great, but not the most skilled conversationalists!
A flexible lifestyle is important
Response from Misty Roussa
Since I work full time, and since our child with CF was born, I have had to make some adjustments to my work schedule. I have also had to leave jobs to go to CF checkups, staying home if there are issues, and adequate health insurance was an issue. It has taken a few times to find something that works, but it has to be done. Otherwise, it can cause a lot of strain on an already really stressful situation.
Allowing time to rest
Response from Nicole Driscoll
Since being diagnosed with CF from birth, I don't really know of any other way of living besides managing the disease. I will say that I think I lived a pretty "normal" lifestyle most of my childhood. It wasn't until I was in my late teens that I started to realize the effects cystic fibrosis was having on my life as it started to progress.
It was a reality check when I started college and quickly realized the toll that little sleep took on me and my health. It was a turning point for me in which I had to make a choice to take care of myself despite not being able to keep up with my new friends in college. I was OK with that, though, as I had always been pretty independent and responsible with regards to taking care of my CF.
While friends pulled all-nighters studying for exams, writing papers or party hopping, I was in bed, sleeping. I knew I had to wake up earlier than my roommate to ensure I completed my treatment before starting my day of classes. I was doing my best to take care of my body despite the peer pressure and new adjustment to living on my own.
Making rest a priority as an adult
This has continued in my adult life and often times I find myself getting frustrated, as I feel as if I am missing out on quality family time with my in-laws (who are night owls) or friends - especially when our time together is so limited. I know deep down it is not worth compromising. I feel confident in my decision despite often feeling left out.
Now that I am a mother of two young children, it is even more important for me to feel like my best self. Children don't have any concept of how early they are getting up and they don't care if I had a bad night's sleep. I have to be in tip-top shape to care for them and help them experience a normal life, despite the fact that I also have to manage CF (which can be demanding at times).
CF made me more responsible
Response from Megan Barlow
To be honest, I don’t feel like I have made a ton of changes to my lifestyle because of cystic fibrosis. I am lucky to be relatively healthy and be able to do many of the things in my life that I want to. I, instead, make informed life choices that prioritize staying healthy and staying on top of treatments, and I have been doing that from a pretty young age. CF has made me a more independent and mature adult. It has given me life experience that many of my friends don’t have and helped me grow up quicker.
I was able to get a job where I work from home, but I didn’t make that choice because of CF. I made that choice and knew it would impact my life with CF positively and that has proven true.
Also, I push myself to run further and exercise more because it is something I enjoy and know it will benefit my lungs.
I have lived away at college alone, away at college with roommates, at home, in a house with roommates, and with my significant other. I, and my parents, did not let the fear of CF stop me from getting all of those experiences. In doing so, it has made me more responsible than ever for my own state of current good health – and for that, I am lucky.
How has cystic fibrosis changed your lifestyle?
Cystic fibrosis can bring about many changes to some people's lives. We would love to hear your story about living with CF.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?