Tell us about the moment CF became real for you
The moment cystic fibrosis became real to me was one I was not prepared for. Growing up I lived a healthy and social lifestyle. I was involved in gymnastics, competitive cheerleading, and track. At 19 years old I moved to San Francisco to pursue my career in culinary arts and not too long after my health took a decline. By the time I was 23, I was working to be listed for a double lung transplant; a live-saving surgery I so desperately needed with a lung function of 18%. Over night I had gone from working as a pastry cook in a three michelin star restaurant to not being a able to obtain a healthy oxygen saturation during simple tasks; such as walking to the restroom from the living room in a 1,000 sq ft apartment. I was immediately rushed to the hospital and stayed there for two months where I was put on hospice, 24 hour supplemental oxygen, and a feeding tube.
What did your first step toward living a healthier lifestyle with CF look like?
My first step toward becoming a healthier me was to accomplish a list of goals in order to get listed for new lungs. Something I am still working at today as I prepare for another set of lungs. These goals included reaching a healthier weight, controlling my glucose and lowering my A1C, maintaining a target creatinine, improving my PFT, remaining in contact with my healthcare team every day, and being 100% compliant on my medical regimen. It look me 6 months to be listed for a double-lung transplant and after waiting for 18 months I received new lungs in October 2015.
What about living with CF do you wish more people knew?
Despite being a mostly invisible disease, there are so many constant factors in our lives that we have to comprise and/or sacrifice. Including enjoying bonfires at the beach because of the air quality from smoke, traveling internationally because some of us in end-stage lung disease have too much risk of becoming hospitalized in a foreign country, doing social activities where we know even 1 individual may be sick at, drinking with friends at times because alcohol impacts absorption which we already struggle at making us malnutrition. I also wish that more parents, caretakers, and children with cystic fibrosis educated themselves on medical knowledge, treatments, trial studies, and healthy eating so that the generations to come enter young adulthood with better tools to advocate for themselves and get the most lifespan with their birth lungs.
When was a time you encountered a challenge and then exceeded your goal?
The biggest challenge I have ever overcame was at 6 months post double-lung transplant. My family and I traveled to Hawaii to celebrate life, success, and to enjoy a time outside of medical walls. About 9 days into the trip we had traveled from Maui to Oahu. I got so dehydrated from the sun and salt water that I had to make a visit to the emergency department on the island. The next day I went back to the beach but again didn’t feel well and had to return to the E.D.. After 3 weeks I woke up at Stanford hospital where I was put on a ventilator, ecmo, and in a coma. Waking up I was so deteriorated I couldn't swallow, speak, walk, use the restroom, or even hold my head up. Over the span of 2 1/2 months I learned to be self reliant again. To brush my teeth, stand, walk, get out of bed, use the restroom, and every thing in between. Even today I still feel the effects of this trauma, however I know that succeeding at all these re-learning experiences was an uphill battle I conquered.
Do you have any goals for the future?
By far the largest goal for my future is to conquer another double-lung transplant; I am in full chronic rejection now. If I gain another set of lungs everything in life will fall behind. Such as marriage, children, career, writing a novel, and being present at all my loved one’s small and big moments.