Despite the Detours, I Live a Full Life With CF

I have learned that I can live a full life -- including marriage, cooking, and skeet shooting -- despite my rare/nonsense cystic fibrosis mutations. Even if love, hugs, and my sense of humor are all I have to give on some days, then I'm OK with that.

| 8 min read
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Caroline Starnes
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Navigating life as an adult with cystic fibrosis is not something I could have dreamed of. It's not something my parents dreamed of when I was diagnosed shortly after birth. They didn't even know if I would make it through the week. I did make it through the week and -- fast forward -- it's been 41 years since my diagnosis. It's emotional to think about, given the obstacles that have been in my path.

My life has been amazing. I sang in the Vatican; I kissed the Blarney Stone; I got married and purchased a home. Despite all the amazing parts of my life, living with cystic fibrosis has caused painful and heartbreaking experiences that have left mental and physical scars. I see those scars every day when I look in the mirror.

The amazing thing is that those scars are a reminder -- a reminder that I am stronger than my past. My path in life has been hard, but I am at peace with it and am thankful that I have had the opportunity to choose a path.

Growing up, my parents did not dwell on the “life expectancy” number. In fact, they did everything they could to encourage a normal life. They held me to high standards with my studies. They encouraged me on the soccer field, in the swimming pool, and on the tennis court. They were supportive when I elected biology as my major in college. My dream was to eventually study medicine and work at St. Jude Children's Research Hospital in Memphis, Tenn. I learned quickly that not all dreams become a reality.

I moved across the country for my first year of college. It was a good experience; however, CF doesn't stop at state lines. I ended up far from home and in the hospital with pancreatitis. Pancreatitis had affected me since I was a child. I maintained great lung function but was constantly hospitalized with horrific pancreatitis flare-ups. Because of this ongoing issue, I made the decision to return home to Rhode Island. This forced me to reassess my dreams and led me to change my major and enroll in nursing school.

Still, sickness followed me. I started to develop chronic sinus issues and toward the end of my college studies, I underwent extensive sinus surgery. I'm not sure what happened during that nearly month-long hospitalization, but it changed me; I didn't have fight in me like I used to. I graduated with my nursing degree, but I never had the desire to enter the medical world professionally after that. I didn't realize it then, but looking back I can see that I was depressed.

About a year later I needed a change and made the decision to move to my mother's home state of Georgia. Georgia is where I found joy in life again. In retrospect, I think my depression stemmed from the feelings that I had let my family down -- I wasn't working at St. Jude's or even as a nurse. I had to overcome those feelings to move forward.

Slowly but surely, I began to love myself for who I was. I lowered my guard and let love in. I thought I would never find someone that would want to deal with a life with CF, but then I met Jonathan. He changed everything for me -- he encouraged me and told me that I could still have a career, even though it may not be what I had planned for myself. He's dried every tear and has been my rock. We got married in September 2015. Marriage was something I just didn't think was in the cards for me. He has proven so much to me, but -- most of all -- that love does not have to evade those living with a chronic illness.

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Even when life seems to be falling into place, there are still challenges that stem from having a chronic illness. I struggle with the anxiety that comes from dealing with hospitalizations. Woefully little is spoken about CF-related anxiety and depression but are widespread issues that face most of us with CF. Initially, my fear of IVs plagued my psyche for years. The incredibly strong medicines left my veins scarred. Eventually, I had a port placed after developing sepsis due to a central line. For me, my port has been a saving grace, but new anxieties continue to arise.

My husband and I had been married only about a month when I had my first pulmonary exacerbation. Together, we got through my first “married hospitalization,” but recurrent infections meant more frequent hospitalizations. A cocktail of medicines wreaked havoc on my body, and the anxiety that stems from the side effects and the sleepless nights are my new fears. Thankfully, I'm much more at ease with being up front about my fears and anxiety.

I've learned that not only is it OK to talk about what's scaring you or giving you anxiety, it is necessary. Speaking out is within your control.

At this point in my life, I was navigating a new life with frequent lung infections but also a new life as a married woman. Inevitably, Jonathan and I began getting the, “So, when are you going to have kids?” question. I never saw myself, not having kids, but the onset of frequent lung infections and decreased lung function was something I needed to focus on.

Ultimately, we decided that kids were not in our future. It was a heartbreaking realization that left me feeling so much guilt. In my mind, I was the reason our parents were not going to have grandkids. The best advice I can give is to always remember that you are doing what's best for you; you're making yourself the priority. Don't let anyone make you feel guilty for that. I don't think I nipped the questions in the bud as quickly as I could have, but it's important to do so; otherwise, it will take a mental toll.

Since then, I have focused my energy on living my best life. My husband and I love to travel. I have an incredible love for cooking -- it's my outlet. My husband has become quite the cooking partner. I always joke and say, “Couples that cook together, stay together!” One of our favorite things to do is recreate dishes that we had on vacation. It's a way for us to bring the adventure home. I also love to do things he loves. My many exacerbations in recent years have limited our deer-stand dates, but I'm hoping to get in the stand again this fall. We also recently started shooting skeet -- what a blast! (no pun intended).

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As most in our community know, a new modulator, Trikafta®, was approved by the U.S. Food and Drug Administration, but unfortunately, I am ineligible to take it or any of the other modulators. I have two nonsense/rare mutations and am still waiting for my turn to have hope of a new drug or treatment. People ask me if I'm disappointed because of my ineligibility to take Trikafta. I don't think I would be human, if there wasn't a tiny sliver of disappointment; yet, I see what it has done for so many, and I can't help but smile. I hope this medication will give others the same opportunities, as I have had. I hope they will be able to travel, go to college, get married, and have a career. You can have those things.

The CF journey is like a winding road -- take the path that works best for you. You have the power to make yourself happy.

Embrace your scars and tell yourself that you are magnificent and stronger than you think. If the only thing you can do on a certain day is to smile, then smile.

I love to give hugs, make people laugh, and love with my whole heart. There are some days that is all I have to offer, and I'm OK with that. I will continue to struggle with pancreatitis and lung infections. I will continue to have faith. This is my life, and it's beautiful.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Caroline lives in the Peach State with her husband and fur-baby, Major. She recently celebrated her 10-year anniversary with GEICO. She loves being involved with the Georgia Chapter of the Cystic Fibrosis Foundation. Her favorite chapter event is Great Strides, where she leads her team “The Salty Anchors.” She recently became chair for GEICO's CF Committee and is loving the challenge of figuring out virtual fundraising. When not working or raising awareness for CF, you will most likely find her singing and dancing in the kitchen while channeling her inner gourmet cook. When she has time, she loves to share her culinary creations on her “Yankee Girl in a Southern World” Facebook page. You can connect with her on Instagram and on Facebook.

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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.