Jane's Story

After two spontaneous collapsed lungs at age 25, I was diagnosed with Pulmonary Fibrosis. With no known cure, the disease is often fatal within 3-5 years of diagnosis. I was fortunate to receive a double-lung transplant in January 2016, just three years after my PF diagnosis. Read below for a glimpse of my life with Pulmonary Fibrosis and today, two years after receiving my transplant.

Now

January 16th, 2018 marked two years since I received a life-saving double-lung transplant at Duke in Durham, North Carolina. In the past two years, I have returned to work full-time, stood by my sister’s side on her wedding day; witnessed the birth of my older sister’s first child, walked miles upon miles, travelled to Paris, and even run again. I participated in a patient panel on Pulmonary Fibrosis at the PF Summit this past November in Nashville. 2018 marks the second year my family and I have organized the Take a Bite Out of PF Dinner – in 2017 we raised over $32,000 for the Foundation and look forward to continuing to contribute to efforts to raise awareness and funding for this not-so-rare terminal Pulmonary disease. None of this would have been possible without organ donation and the efforts of doctors to understand this disease and find more effective ways to treat it.

Then

"I’ve forgotten what it feels like to breathe; I’m preoccupied by it, and I am aware of every inhale and exhale I attempt to make. I was diagnosed with interstitial lung disease (pulmonary fibrosis) in December 2012, right after undergoing surgery for my second collapsed lung that year. At the time, I was living in the San Francisco Bay Area attending culinary school. I was 25 years old and had recently left the corporate world of New York to pursue a return to the world of food and wine; I spent at least eight hours a day on my feet in the kitchens - lifting, running, butchering, constantly moving. But I had known something was not quite right with my breathing for about a year. I had a persistent dry cough, which several doctors attributed to allergy induced asthma or acid reflux, but none seemed too concerned. My first lung collapse in February 2012 had been alarming, but no one sensed it was anything more serious than a spontaneous event likely due to my tall and thin build. However, when my other lung collapsed in December and a biopsy was performed, interstitial lung disease was the diagnosis and I was sent to see a specialist in San Francisco. A few months later and no real understanding of why I had developed the lung disease or if there would be any viable courses of treatment, I returned to New York in order to have the support of my family while navigating these waters.

In the early stages of the disease, I was determined to keep it a secret - I didn’t want it to take over my life or identify me. I was Jane, the 26-year old wine writer and buyer, who lived in New York and loved to cook, and also happened to be dealing with pulmonary fibrosis. However, as I’ve gotten sicker, I feel as if I’ve morphed into Jane, who has pulmonary fibrosis.

I would not recognize me today as the same person two years ago- a 26-year old commuting five days a week from New York to Westchester - navigating the subways, climbing a large flight of stairs at the end of my train ride, walking the streets of New York on the weekend and going to the gym… all while breathing the regular air around me. The disease has moved quickly and unapologetically through my body, and taken with it any element of an active lifestyle, a sense of independence, freedom, and most obviously, my breath.

Today, I am tethered to my oxygen concentrator 24/7, unable to perform simple tasks such as getting dressed while standing, showering, moving from one room to the next without needing to rest. I cough - often. I cannot recall the last time I set foot in a grocery store, I am no longer able to cook for myself or others - a task that once was the ultimate in enjoyment for me, and sometimes I will look out the window only to come to the realization that I haven’t left the apartment in two weeks. I get breathless from talking, and have mastered the art of avoiding any situation that would require I walk and talk simultaneously or laugh too hard for fear that my lungs couldn’t handle it.

I have been on the transplant waiting list for a little over a year. The scariest realization I have had recently is that I no longer think of my situation as “when” I will get the call for transplant, but “if.”

On bad days, I am desperate for my phone to ring, but troubled by the fact that by nature, something I am hoping for is something that can only happen at the hands of grief and pain for others. It’s hard to reconcile that my chance for more life must come from the death of someone else. It’s a surreal feeling to be waiting for a transplant, and one I don’t know I’ll ever fully comprehend. But for now, I have learned to pace myself, to adjust my expectations, always plan ahead and, above all else, remain positive.

On good days, I am full of hope - hopeful that my call will come soon, and grateful for the incredible and generous support system I am lucky to have: parents who were enjoying an empty nest, but have now reprised their roles of mom and dad, taking me to doctors appointments, preparing meals for me; four siblings who spend any free minute they have from work helping me - packing up my entire studio apartment when I moved last month, driving me five hours to New Hampshire and carrying my oxygen equipment for me so I could attend my best friend’s wedding, and bringing over sandwiches from our favorite Italian deli; an employer who has let me work from home for the past year, as my illness progressed; doctors and nurses who are dedicated to caring and helping, and making a difficult process as painless as possible; friends who visit me and never complain that I don’t come to their homes, and offer to bring me groceries. They help preserve some semblance of normalcy for me - which may be the toughest non-physical attribute of this illness to reconcile - the loss of anything that is or ever was normal."