From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today’s guest is Sigrid Ladores, a Pediatric Nurse Practitioner, CF reproductive health researcher, and CF wife. As she recounts her family’s unique challenges in combating the rare, genetic disease, she reminds us that when you are equipped with an unwavering sense of determination and hope, CF doesn’t stand a chance.
The CF community may be small, but it is strong. A disease classified as “rare” means that people and families with CF have to band together and be vocal in their fight to find a cure. And Emily is one of the most vocal fighters I have ever met.
I first met Emily at the University of Alabama at Birmingham (UAB) during a 2018 Rare Disease Symposium where she was an invited speaker. I’m an Assistant Professor at the UAB School of Nursing and attended the symposium for my professional development.
As I entered the auditorium to look for a seat, I heard an unmistakable cough that I instantly recognized from my experience with CF.
As I entered the auditorium to look for a seat, I heard an unmistakable cough that I instantly recognized from my experience with CF. I immediately thought, “Good, I hope someone’s here to talk about CF.” I hadn’t opened the symposium agenda yet to see that Emily was in fact a speaker—and what a passionate speaker she was!
She blew away (pun intended) the room with her wit, charm, and clear passion for helping the “10-percenters” (the 10% of individuals with CF who still don’t have a modulator therapy for their mutations). The audience was visibly inspired by this petite lady who has raised millions of dollars to fund research to find therapeutics for the 10-percenters.
When she finished, I sought her out and greeted her with “Go Quakers!” Establishing rapport was easy between two Philly gals and we quickly bonded over being Penn graduates and our dedication to helping those with CF. The next day we shared a flurry of emails, and it was clear that we were becoming big fans of each other’s work. Then she invited me to write a guest blog for her website, and I happily accepted.
Why am I passionate about “all-things-CF?” I’m a pediatric nurse practitioner and have taken care of CF patients and their families for more than 20 years. I’m also a researcher investigating reproductive health issues in CF.
But most importantly, I’m married to a man with CF. My personal and professional lives intersect in CF, and I’m deeply honored to work with, and learn from, the CF community. On the personal side, I’ve been married to Andrew for almost 19 years. We live a good life. It is not necessarily an easy life but it is a very good life. We live each day with gratitude.
We live a good life. It is not necessarily an easy life but it is a very good life. We live each day with gratitude.
Writing this blog prompted me to reflect on the ups-and-downs of life with CF. The hardest times are when Andrew is hospitalized, which thankfully, are fewer since his lung transplant. Pre-transplant and pre-kids, he spent 2-3 weeks every 3-4 months in the hospital due to CF exacerbations, and I spent most nights in his hospital room. Now that we have two kids, I don’t stay overnight with him because I have to attend to the kids while working full-time. This is when we most feel the intrusion of CF into our lives.
The separation from the kids is difficult for Andrew, and we’re thankful for technology to keep us connected. How funny it is to have our toddler’s first few sentences include: “Daddy, why you in the phone?” as they chatted on FaceTime. Just like Emily, we believe in the power of using social media positively. During Andrew’s most critical moments, we felt the love, support and prayers from family, friends, and even strangers from all over the world. When Andrew was on a ventilator and unable to speak, I would read to him the kind messages that everyone posted on Facebook. He, in turn, felt that people were pulling for him and his recovery.
Managing CF is a daily grind and affects our family like everyone else’s family with a chronic illness. In order to not let CF control your life, you have to pre-emptively control it by sticking with your daily regimen of medications, proper nutrition and exercise.
We made the conscious decision to involve our kids from an early age to help educate them about CF and enlist their help to “take care” of their daddy on bad days. Our son learned how to deliver effective chest physiotherapy by watching me “clap” on his daddy when he was three years old. He made the perfect “cup” with his little hands and knew the correct sound to elicit when clapping on his dad’s back. And when I accessed his dad’s central line, he was my little assistant, complete with his own gloves and mask.
Post-transplant life carries its own set of challenges. Due to Andrew’s lowered immune system, we need to limit his exposure to germs so we decided to hire a nanny versus placing our second son in daycare. While we take precautions to keep Andrew safe and healthy, we also don’t allow CF to limit what we do individually or as a family.
Andrew started law school in his late-30s while his FEV1 [a measure of lung capacity] was also in the low 30s. He took two semesters off for medical leave to recover from his lung transplant and then finished his degree. He is now a practicing attorney.
And while undergoing fertility treatments to conceive our first son and caring for Andrew, I was a PhD student and full-time nurse educator. I finished my doctorate two years after his lung transplant. Pre- and post-kids and pre- and post-transplant, we travelled the world with oxygen tanks, cannulas, nebulizers, and dozens of medicines, toys, and diapers. Getting through airport security was not always enjoyable, but we did it and we got good at it.
So would I choose to marry Andrew all over again, knowing the hardships involved in loving and living with someone with a chronic, life-limiting disease? Yes.
So would I choose to marry Andrew all over again, knowing the hardships involved in loving and living with someone with a chronic, life-limiting disease? Yes. Our kids have learned compassion, how to face adversity and fear with courage and grit, and how to embrace life despite its uncertainties. But would I want to see a cure for CF so I don’t have to worry about being a widow sooner rather than later? Absolutely yes. So Emily, I’m with you—advocating, fundraising, and fighting to find a cure in our lifetime.