Lauren’s story: Living beyond my diagnosis

May 18, 2018
Lauren Doane | Texas Children's Hospital
Image courtesy of Lauren Doane

I’m Lauren, and I have cystic fibrosis. This is a genetic, chronic and life-threatening disease affecting primarily the lungs and digestive systems, alongside many other organs. Cystic fibrosis causes thick, sticky mucus to build up along the linings of the lungs and digestive tract, causing frequent lung infections and difficulty digesting food and absorbing nutrients.

I was a patient at Texas Children’s for 19 years in their Pulmonary Medicine outpatient clinic, where I visited quarterly for check-ups. In addition to my height/weight checks, these appointments included pulmonary function tests (PFT) to gauge my lung performance, X-rays to monitor the progression of my disorder and blood work to check vitamin levels due to malabsorption.

I had a multidisciplinary team to closely monitor my condition, consisting of a pulmonologist, respiratory therapist, nurse, pharmacist, dietitian and social worker. I considered this team a family away from home! You can read more about them here.

There’s no doubt cystic fibrosis impacts my life medically, from the countless hours of daily breathing treatments to the oral and intravenous (IV) antibiotics, to the frequent X-rays and blood draws. Many of those afflicted with cystic fibrosis face dangerous infections requiring lengthy hospital stays, and many must go through weeks and months of IV therapy. It’s easy to get wrapped up in all of the things cystic fibrosis takes away from me, but its real impact becomes apparent when I start to recognize everything it has given me and just how lucky I am.

If I were never diagnosed with cystic fibrosis, I’d probably be a bit taller, have a larger lung capacity and more time in my day to spend as I wish. Do I wish a cure existed for cystic fibrosis? Yes. Do I wish I never had cystic fibrosis? No.

Let me explain. Even though cystic fibrosis has and will always rob me of some life experiences, I’m proud of the person I’ve become despite the hardships and challenges I’ve had to face. This disease has allowed me the opportunity to become an advocate for myself at young age – not only in the medical world, but with my peers as well. I’ve learned I have to look out for myself, and that it doesn’t matter if “everyone is doing it.” If it’s not healthy for my body, then I won’t do it.

Throughout my journey with cystic fibrosis, I’ve learned about the importance of organization. I have to keep track of all my medications – which ones need to be refilled, which ones are taken when and which medications I’m allergic to, among many other things. Without a well-organized medical system, it would be easy to forget key components to my care that could potentially cause serious problems. This sense of organization transfers over to my professional, career life as well, as I’ve been told how detailed my notes for tasks and meetings are. I have cystic fibrosis to thank for this.

I’ve also learned that life goes on. Since I have a shorter-than-average life expectancy, I’ve realized how pointless it is to hold onto small arguments and rifts. Why should I waste my time in the past when there’s so much living left to be done? I want to experience all that I can, and the best way I can do so is to live in the present and look forward to the future!

If you're interested in accessing a variety of resources on health care transition from pediatric to adult-based care, click here

Post by:

Lauren Doane, former patient