Tuesday, November 24, 2015

"I've forgotten what it feels like to breathe"

Jane is one of my patients living with pulmonary fibrosis. She has agreed to share her story here on my blog. Please share Jane's story with your friends and loved ones to help raise awareness of pulmonary fibrosis.

"Ive forgotten what it feels like to breathe; Im 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 there 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 didnt 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 Ive gotten sicker, I feel as if Ive 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 havent 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 couldnt 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. Its hard to reconcile that my chance for more life must come from the death of someone else. Its a surreal feeling to be waiting for a transplant, and one I dont know Ill 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.
At my friend's wedding in New Hampshire

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 friends 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 dont 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."

-- Jane
November 2015


  1. Jane, thank you for sharing your story. I admire your courage very much. I will say prayers that your call comes and you are able to continue your life's desires. Warm regards, Kathy Lindell

  2. Jane, So grateful you would share your story! So touched by your young age and the love for life you exude! My heart goes out to you! All of the good energy in the world coming your way as you navigate this very challenging path of Interstitial Lung Disease and your Lung Transplant! You are a lovely and awesome inspiration for the rest of us struggling with this difficult disease! May you find peace and joy in every day as you journey!! Kindest Regards to you! Deborah

  3. Jane, It is hard to let others know of this illness. From all outward appearances, with the exception of prednisone's side effects, one looks normal. As the disease progresses it takes a bit more of you and who you once were. Relying on other's is very hard, esp. spouses and loved ones. I pray for you and so many others that the gift of life comes soon. I know when the shoe has been on the other foot how honored I am to lend a hand to a friend in need. It's hard, even for myself, but accept the kindness from others. It's their way of loving you. Thank you for sharing your story. You are a very strong woman!

  4. Jane, your words are beautiful. I'm a 58 yr old wife, mother and grandmother. I am on my 3rd year of diagnosed IPF. I sit here with tears dripping down my face because yesterday my husband did MY job of cooking Thanksgiving. This awful disease takes away our soul, our pride, our joy. I can no longer do the things I love: shopping, cleaning, cooking but most of all playing with my grandchildren. I have no hope of transplant but that is ok.... I firmly, joyously believe in Jesus Christ. I have no fear of dying. Please hang in there and know that you are in God's hands and I'm praying for you. Much love to you, Alice

  5. Come out to Phoenix, AZ. The wait list is very short and the winters are beautiful (yea, the summers suck). My dad went through the process but was declined due to his heart. They are wonderful people at Dignity Health. If you'd like more information or want to come out to check it out, you are welcome to stay with me. I'm 10-15 minutes from the hospital.

    1. oh, if you are interested, I don't check my google email. My email is cheinle at kbhome dot com

  6. I think personal accounts like this can be a great source for other people just finding out they suffer from pulmonary fibrosis. Thanks for sharing this!

  7. A CT scan in August of 2009 verified that I had Idiopathic Pulmonary Fibrosis. My first symptoms were cough and shortness of breath. I was on prednisone and inhalers. My blood oxygen level was 50 and i was extremely short of breath, i was barely able to breath. I went through cardio pulmonary rehab, It helped but not too long before all the severe symptoms returned. December last year, a family friend told us about Rich Herbs Foundation and their successful lungs disease treatments, we visited their website www.richherbsfoundation.com and ordered their IPF herbal treatment, i am happy to report this treatment effectively reversed my Idiopathic pulmonary fibrosis and symptoms. I am back on my feet, i walk daily now and has made me able to walk my two dogs again without shortness of breath or sudden loss of energy. My activity level is up again.

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