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I was diagnosed with a rare, terminal lung disease in August 2015. The news had come just weeks after returning home from my honeymoon; my skin still wearing its Hawaiian tan. At the time of my initial diagnosis, I was only 28-years-old, the ink still drying on my marriage license. And all I had imagined for myself at that time was a bright and boundless future; a life of love and home and children, along with service and wild adventure still ahead of me — waiting to be explored, waiting to be shared. And all it took was a handful of words to irrevocably alter that life I’d already written for myself.
Much of mine and my new husband’s dreams and aspirations changed that day, with the understanding that over time my lung function would steadily decrease and, without a double lung transplant, ultimately prove fatal. In what felt like an instant, the weight of death – all too soon – had come to the forefront of our reality; death became the third member of our marriage.
Two months after diagnosis, I required 24-hour oxygen in order to go about my basic daily tasks: climbing stairs, grocery shopping, even getting dressed for the day. The night I put on my oxygen tubes for the first time is a night I remember well. With mixed emotion. The presence of tubes and blowing air was foreign to me, feeling invasive as it wrapped around my cheeks, getting caught on the corners of furniture, and introducing me to a life now measured in liters and feet. Yes, with the oxygen, I was given breathe and life.Yet, with this new dimension added to my life, an unmistakable void remained – filled with echoes of the life I would now slowly need to let go.
But once the initial sting wore off, all I wanted to feel was normal (as normal as my health would allow). “Simple enough”, I thought, but it quickly proved otherwise. Planning even the simplest trips became a logistical nightmare. Because I required such a high level of oxygen, my husband would need to fill the back of our tiny VW Golf with about 10 tanks anytime we left for even the simplest of errands. We often wondered how long we’d be able to keep this up, and if I’d have to entertain the thought of being trapped at home, forever connected to my large oxygen concentrator.
That all changed when I found Inogen. Because of its small size, convenience, and chargeability, I felt for the first time in a long time, a regained sense of the freedom I thought I’d lost for good. Now I had mobility. I had more time and less fear. And to top it off, I now had more room in my car for shopping. While we used to be tasked with endless steps and tools and needed space to ensure we had enough oxygen to go about our lives (not to mention the nightmare it can be working with insurance companies and oxygen distributors), now all we needed was a charged battery (and maybe a backup battery, just in case) and proximity to an electrical outlet every 4-5 hours. From that first puff of my Inogen air, I instantly felt that a large measure of the life I once knew and the woman I once was had been restored to me.
Much has changed in the year and a half since starting oxygen and I’m happy to report that I’m still here with my own lungs intact! But more than that, my Inogen has allowed me to live this past year and a half with a sense of peace, with a sense of freedom, and with the empowerment of waking each day without any need to compromise who I am or what I know I can become. While I’m hopeful my condition will improve (possibly to the point of not needing any supplemental oxygen), my Inogen is an integral part of my life; giving me breath with each puff of air and hope in the coming days that those breaths assure me.
To read more about Mackenzie’s oxygen story visit: https://bravelittlelungs.com