Project CF Spouse

As life shifts, so does our community. We’ve faced changes with Trikafta, the impact of COVID, and more. Through it all, we’re still here—committed to supporting spouses and partners of those with CF. In our latest blog, we hear directly from our Founder, Megan Barker, on where we’ve been, what we’ve learned, and how we can grow together. Read the full letter here: https://wix.to/sTWpLFv #projectcfspouse #cysticfibrosis #cf #cfspouse #cfpartner #newblog

Dealing with insurance when your spouse or partner has Cystic Fibrosis is an exercise in frustration. It often feels like we’ve earned a PhD in "Navigating Insurance Bureaucracy." We find ourselves educating insurance companies on how things should be billed, engaging in marathon phone calls, and connecting the dots between different reps who give conflicting information. Why do we do this? Because our loved ones have enough on their plates. Managing their health and attending countless medical appointments is more than enough for them to handle. Understanding primary vs. secondary insurance coverage is another layer of complexity. Knowing which insurance pays first and coordinating benefits can feel like solving a puzzle without all the pieces. Dealing with co-pay accumulators that prevent assistance programs from counting towards deductibles or out-of-pocket maximums is another hurdle. It's like trying to fill a bucket with a hole in it—no matter how much you pour in, it never gets full. Then there’s the challenge of knowing which medications require specialty pharmacies versus which ones can be picked up locally. One day you’re driving to Walgreens, the next you’re dealing with a specialty pharmacy that only ships on certain days if specific criteria are met. The guessing game never ends. We’re not just spouses or partners; we’re insurance experts and advocates, constantly playing the middleman between providers and insurance companies. It’s a complex, maddening role we take on out of love, but let’s be real—it’s exhausting. Here’s to all of us navigating this convoluted system. Sharing our struggles can make the load a bit lighter and bring hope that one day the system will be easier for everyone. #projectcf #cysticfibrosis #cfspouse #cfpartner #pcfs #insurance

It's #65rosesday!! Do YOU know the story behind "65 Roses?" #projectcfspouse #pcfs #cysticfibrosis #cf #cfspouse #cfpartner #65roses

"In our journey, each step we take together strengthens our resolve, deepens our connection, and affirms our commitment to face life’s challenges with hope and courage." - A Voice from the CF Spouse Community 🌟 Project CF Spouse is not just a project; it's a heartfelt mission dedicated to forging a sanctuary of support and understanding for spouses and partners of those battling Cystic Fibrosis. We are here to listen, to share, and to amplify your voices—transforming challenges into pathways of support and empowerment. 📢 Calling All Healthcare Professionals: You are on the front lines, seeing the struggles and strengths of the CF community firsthand. We ask you to extend your influence further by sharing Project CF Spouse and the work we do with the partners of your adult patients. Your endorsement could be the beacon that guides someone to the support they desperately need. 🌟 CF Foundation Local Chapters, your grassroots impact is undeniable. Please, reach out actively to the spouses and partners in your areas. They are looking for their place in this community. Encourage them to connect with Project CF Spouse. Your efforts in bringing them into our fold are crucial in weaving a tighter network of support. 💬 Join Our Conversation: Your experiences are the heartbeat of our “project”. Share your journey, propose solutions, or engage with us across any and all of our social media sites! Whether it’s sharing a story, liking a post, or participating in discussions—every action you take helps us identify the needs of our community and broaden the work that we do. 💜Together, we can ensure that no one in our community feels alone. #projectcfspouse #cysticfibrosis #cf #cfspouse #cfpartner #together

Understanding and appreciating the significant roles these dedicated individuals play can help us create more targeted support systems to aid them in this challenging but critical role. Whether it's through offering emotional support, sharing caregiving tips, or simply acknowledging their efforts, every little bit helps in fostering a stronger, more supportive community for all affected by cystic fibrosis. To everyone who stands steadfastly by their partner’s side, your role is vital, and your strength is appreciated by the entire community.💜💜💜 #projectcfspouse #cysticfibrosis #cf #cfspouse #cfpartner

"Happy Star Wars Day, everyone! 🌟 Today, let's embark on a journey into the galaxy of lung health with pulmonary function testing (PFT). Just like navigating through hyperspace, PFT helps us chart the course of our respiratory system's function. Pulmonary function testing measures various aspects of lung function, including how much air your lungs can hold, how quickly you can move air in and out of your lungs, and how efficiently your lungs exchange oxygen and carbon dioxide. Think of it as your very own diagnostic droid, providing vital information about your respiratory health. Much like the Force, which flows through all living things, understanding your lung function empowers you to take control of your respiratory destiny. Whether you're a Rebel Alliance fighter or a Jedi Knight, having optimal lung function is essential for navigating through life's adventures. So, on this special day, let's channel our inner Jedi and prioritize our lung health. May the Force be with your lungs today and always! #projectcfspouse #cysticfibrosis #cf #cfspouse #cfpartners #Maythe4th #starwarsday

Day 3 of CF awareness month! Let’s see what YOU wish others were aware of! Share 3 things you wish others knew about the struggles of being a spouse or partner to someone living with CF or ways you wish you were better supported/ represented in the CF community!!! #projectcfspouse #cysticfibrosis #cf #cfspouse #cfpartner

Why Project CF Spouse? Let me share my CF Spouse story with you. Kody told me he had CF on our 3rd date. I knew very little about CF at the time. Over the next few months, he slowly introduced me to other aspects of CF like treatments, hospitalizations, antibiotics, and family planning issues. We had a lot of deep conversations. I did go through a brief period of panic about a month or two into our relationship, mostly thinking about how CF would interfere with all the things I dreamed of doing with a future spouse, like traveling, camping, and having a family. However, I never seriously considered ending the relationship. We had a strong connection from the very beginning. There were so many things about Kody that I loved so much. He was more mature than most 20-something guys and had a knack for making little things special, and for doing fun things now rather than putting them off. This was a good contrast to my more spartan attitude toward life and small luxuries, fostered through many years as a poor, starving student and resident. Being in a relationship with someone with CF can be scary, but having CF is also scary. Kody didn't ask for this, but I knew what I was getting into. There are a lot of unknowns, but none of us are ever promised tomorrow. Some people who have lives that have been untouched by illness might be able to forget this reality, but we do not have that luxury. CF definitely makes life harder, but it also means that we take nothing for granted. Why Project CF Spouse? Because our stories matter.

Hey! Guess what day it is?! No…. not hump day! well.. actually yeah… but its also the first day of CF awareness month!!!! Let’s hear why CF month is important to each of you! #CFSpouse #ProjectCFSpouse #CysticFibrosis #CFAwareness #CysticFibrosisAwareness #CFAwarenessMonth #CysticFibrosisAwarenessMonth

Chag Pesach Sameach to all who celebrate!