My #Oxygen Story
10, 20 years ago, I'd have no option but a lung transplant. Organ transplants are a medical miracle, to be sure, but a medical horror as well, in a way. I've decided - unusually for me - that if and when the time comes, I will not research anything in advance. No lists. No questions. Definitely no watching videos.
Instead, I will take each moment as it happens and cast my thoughts ahead - to a life post-transplant when I can run. I want to run. Really run. Like transplant Olympics run. I've never, ever, even as a child, been able to run. I've never even been able to walk at an average pace. Growing up, I trailed every friend group, slowly drifting out of the safety of the pack to have to struggle along in everyone else's wake.
I hope to never, ever have to have a double lung transplant. But part of my reality is imagining that I may get a midnight call someday. Travel fast to the hospital to lay down on a gurney, slowly, and submit to a fate that has been coming at me since I was three years old and cannot escape. I've already decided that as I am wheeled down the hall, I will close my eyes and fix in my brain the image of my daughter when she ran track - long legs flashing, blonde hair streaming in the wind. The flow and the speed. I long for it.
Where did my oxygen story begin? In 1970, when I was three, the doctors told my mother to take me home from the hospital, where I had been recovering from an influenza infection that had tried very hard to kill me. If I didn't die, they said. Bring her back. We'll try and figure something else out. Can you imagine going through that as a parent?
After a four-month hospitalization, I finally left the hospital. I landed back in Western Pennsylvania, much paler, much thinner, and quieter, the recipient of a small Christmas tree decked out in 100-dollar bills donated by our church to help with the medical bills (story continues below).
One of four steelworker's daughters, I would spend the next decades with an invisible illness that damaged my lungs further with every cold that became pneumonia. I constantly caught pleurisy and bronchitis. With every infection and hospitalization, I lost more lung capacity.
Growing up, I could never walk with my friends, always tailing after my sisters because even though I didn't use oxygen then, I could not breathe. Gym class was a torture. Going to the beach - walking in sand and humidity - well - I just had to clench my teeth and try to keep up with everyone else. It seemed my whole life was just a silent struggle, with all the fire I had had as a toddler now directed at putting one step in front of the other. My sisters thought me weak because I couldn't live as loudly and brazenly as they could. And for a long time, I thought that of myself as well. It wasn't until the doctor prescribed oxygen for me after the last, worst pneumonia that I realized I was not.
Now, I use medical oxygen full-time and have less than 25% lung capacity. I advocate for other patients and help people adjust to learning how to use oxygen at home. More than that, I want to share that life can still be good and that oxygen users can live well using the tools they have been given. The experience has given me a different perspective on life - my life. I'm not weak because I am slower. I am stronger because I never gave up. I was the girl who wasn't supposed to live but did. I've been using home oxygen for seven years and remain amazingly mobile. Every day with my daughter is a gift.
Because of bronchiectasis, aspiring to motherhood and a career was not for me. I could not breathe well enough to work outside the home and be the parent of a young child, even with my husband's help. Once again, I was left behind by my peers and sisters and, I think, looked down upon. But I always refused to play the pity card. The world has so much good in it; I want to be a part of that. I took to being a stay-at-home home as a vocation, working to build my family and community.
I think the worse thing about using oxygen is the pain and fear it causes my daughter. All our lives, I've created a world where she could thrive. I named her and called her into being, shaped and molded her worldview as every parent does. Even when I couldn't push the stroller further, swim with her as I would have liked, or go on family hikes. I never stopped being a parent. I never dove into drugs or alcohol to deal with it. I exercised when I could. I am proud that I was able to model a home in which maybe everyone didn't get everything they wanted, but everyone got most of what they wanted.
Ironically, it is now that I am tethered to an oxygen concentrator during a pandemic that I feel newly energized and inspired to get my nasal cannula cover out into the world to help other people. I am 55 years old, a user of oxygen, a holder of three patents, a product award, and more…because I use oxygen.
I was a stay-at-home mom for 20 years before I started my e-commerce store, Hartfiel Medical, through which I sell the O2 FRESH nasal cannula cover. My daughter has witnessed that I can grow as a person and learn and do really hard things to get my business started. She is my chief cheerleader. When she was a child, I built a world for her of home-cooked meals and warm blanket snuggles, and a lap and book that was always available. Now that she is an adult, she is witnessing my growth as a person and entrepreneur. She will go through things in life that will make her miserable. I hope the example of working and living while using oxygen is a gift for her. I want her to be able to trust my honesty and lean into my strength for her whole life. Who knew in the midst of this terrible disease, we would find a new direction and discover new things about each other. Living with oxygen is difficult. The equipment is heavy. The tubing gets tangled everywhere. My nose is dry and, at the same time, a drippy torment from the flow of air. But she is a gift.
My daughter, more than anyone, has always shortened her pace to mine and walked beside me, no matter how slowly I travel. But if I ever have to have a lung transplant, my daughter will not be able to come where I am going. The operating room's double doors will separate us. Answers, pain, hope, love, luck, and miracles hang in the cool air on the other side like life's greatest mystery. The biggest regret of my life is that I can't save her from the pain of that. But in my dreams, sleeping and waking, I always run with her and for her.
#transplant #copd #lung #mothersday #mothers #parenting