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Emily speaking at\u00a0the University of Alabama at\u00a0Birmingham\u00a0(UAB) during\u00a0a 2018 Rare Disease Symposium<\/p><\/div>\n
\nAs I entered the auditorium to look for a seat, I heard an unmistakable cough that I instantly recognized from my experience with CF.<\/p>\n<\/blockquote>\n
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, \u201cGood, I hope someone\u2019s here to talk about CF.\u201d I hadn\u2019t opened the symposium agenda yet to see that Emily was in fact a speaker\u2014and what a passionate speaker she was!<\/p>\n
She blew away (pun intended) the room with her wit, charm, and clear passion for helping the \u201c10-percenters\u201d (the 10% of individuals with CF who still don\u2019t 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\u00a0for the 10-percenters.<\/p>\n
When she finished, I\u00a0sought her out and greeted her with \u201cGo Quakers!\u201d 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\u00a0were becoming big fans of each other’s work. Then she invited me to write a guest blog for her website, and I happily accepted.<\/p>\n
At my 20th year Penn Alumni weekend with Andrew. Ironically, Emily was also there!<\/p><\/div>\n
Why am I passionate about \u201call-things-CF?\u201d I\u2019m a pediatric nurse practitioner and have taken care of CF patients and their families for more than 20 years. I\u2019m also a researcher investigating reproductive health issues in CF.<\/p>\n
But most importantly, I\u2019m married to a man with CF. My personal and professional lives intersect in CF, and I\u2019m deeply honored to work\u00a0with, and\u00a0learn from, the CF community. On the personal side, I\u2019ve been married to Andrew for almost 19 years.\u00a0We live a good life.\u00a0It is not necessarily an easy\u00a0life\u00a0but it is a very good life. We live each day with gratitude.<\/p>\n
\nWe live a good life.\u00a0It is not necessarily an easy\u00a0life\u00a0but it is a very good life. We live each day with gratitude.<\/p>\n<\/blockquote>\n
Me and Andrew on our wedding day 19 years ago.<\/p><\/div>\n
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\u00a0fewer 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.\u00a0\u00a0Now that we have two kids, I don\u2019t stay overnight with him because I\u00a0have to\u00a0attend to the kids while working full-time. This is when we most feel the intrusion of CF into our lives.<\/p>\n
The separation from the kids is difficult for Andrew, and we\u2019re thankful for technology to keep us connected. How funny it is to have our toddler\u2019s first few sentences include: \u201cDaddy, why you in the phone?\u201d as they chatted on FaceTime. Just like Emily, we believe in the power of using social media positively. During Andrew\u2019s 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\u00a0unable to\u00a0speak, 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.<\/p>\n
Managing CF\u00a0is a daily grind and affects our family like everyone else’s family with a chronic illness. In order to\u00a0not let\u00a0CF\u00a0control your life, you have to pre-emptively control it by sticking with your daily regimen of medications, proper nutrition and exercise.<\/p>\n
Asher walking on the treadmill alongside his daddy while daddy was doing Physical Therapy in the hospital one month after a bilateral lung transplant. He encouraged his daddy to “walk faster”.<\/p><\/div>\n
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\u00a0their\u00a0daddy 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\u00a0accessed\u00a0his dad’s central line, he was my little assistant, complete with his own gloves and mask.<\/p>\n
Asher, when he was 4 years old, “assisting” me with a port-a-cath central line access procedure that I was doing on Andrew in front of my nursing students.<\/p><\/div>\n
Post-transplant life carries its own set of challenges. Due to Andrew\u2019s lowered immune system, we need to limit his exposure to germs so we decided to hire a nanny versus placing our second son in\u00a0daycare. 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.<\/p>\n
Andrew started law school in his late-30s while his FEV1 [a measure of lung capacity] was also\u00a0in 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\u00a0attorney.<\/p>\n
Andrew finished his law degree all while juggling two kids, a wife, and a bilateral lung transplant!<\/p><\/div>\n
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\u00a0airport security was not always enjoyable, but we did it and we got good at it.<\/p>\n
\nSo\u00a0would I choose to marry Andrew all over\u00a0again, knowing the hardships involved in loving and living with someone with a chronic, life-limiting disease? Yes.<\/p>\n<\/blockquote>\n
So\u00a0would I choose to marry Andrew all over\u00a0again, 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\u00a0how to\u00a0embrace life despite its uncertainties. But would I\u00a0want to see a cure for CF so I don’t have to worry\u00a0about being\u00a0a widow sooner rather than later? Absolutely yes. So\u00a0Emily, I\u2019m with you\u2014advocating, fundraising, and fighting to find a cure in our lifetime.<\/p>\n","protected":false},"excerpt":{"rendered":"
De vez en cuando, invitamos a blogueros invitados que forman parte de la comunidad de EE a contribuir con sus voces \u00fanicas a nuestro blog. La invitada de hoy es Sigrid Ladores, enfermera especializada en pediatr\u00eda, investigadora de salud reproductiva de la FQ y esposa de la FQ. Mientras relata los desaf\u00edos \u00fanicos de su familia para combatir la rara enfermedad gen\u00e9tica, nos recuerda que cuando ... <\/p>\n
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