Changing the Pace in Life and Work With Chronic Illness

When I was younger, my life with pulmonary hypertension (PH) was busy. I was active in dance, softball, and the arts. I was an engaged student and had an active social life. We took family trips and made many memories. I lived a full childhood in tandem with my progressing disease.

When college came, I began to walk the line of maximum output. I was a full-time nursing student with clinical rounds and a demanding course load. I worked several small jobs around campus, and I was quite social.

I had five wonderful roommates for three of my four years in school, which meant that something was always happening. I didn’t slow down often, and even when I did, I still juggled things so that nothing was dropped.

While a full-time college student living on campus, I also was a full-time heart and lung transplant candidate and a PH patient. Every three months, I was summoned to the Mayo Clinic for evaluation and review. I was in severe, declining heart failure, and I was living with incredibly dangerous pulmonary pressures.

I was always short of breath while walking around campus, and I also had to manage my IV medications. I was a young 20-something who didn’t know how to change my life in order to survive.

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My transplant came at an interesting moment when I was stepping from the structured expectations of youth into adulthood. I graduated from college in the spring of 2017. The following year, I was entirely committed to organizing my transplant journey. In August 2018, I moved to California to be near Stanford Hospital. Three weeks later, I received the call.

The three years that followed my transplant have looked very different than the rest of my life. My hospitalization was a traumatic eight-month trial in which I achieved little other than staying alive. After discharge came a demanding period of learning how to live at home with an entirely new set of health issues.

My family and I held our breath for a while, just waiting for me to be readmitted to the hospital, because we believed that my care in a home setting was unsustainable. But that day never came. And then, life slowed down.

At 26, I’ve quietly found myself a bit confused about what comes next. I’m learning that I’m the one who must choose.

I think I’ve been waiting for my hectic schedule to pick back up again. Before my transplant, I never had the chance to settle into a phase of independent adulthood. I’m realizing what a gift it is to be able to control my days at a pace that simply wasn’t an option when I was younger.

For a while, I was discouraged by being left out of the workforce. My tracheostomy and oxygen-dependent lungs made nursing work, or even office work, impossible. But in October 2018, seemingly out of nowhere, I accepted a job with a photo-editing company, a skill I’ve fortuitously developed over the years. I can do this job remotely, as many people now do.

COVID-19 has been horrendous for the disabled community, but I will say that I am thankful the pandemic has created an environment that is more conducive to working remotely. I think this is a good thing for anyone living with a complex, unpredictable illness.

Since last winter, I’ve adopted a rather idyllic schedule: I wake up around 7:30 a.m., after getting as much sleep as I need. I spend some time taking my medications and then start work. I break for lunch, then either work more or dedicate time to creating art in my studio.

I’m a whirlwind of contract work and self-employment, which suits me well. Sometime between 5 and 6 p.m., I walk or bike — anything to move my body when I’m able to. Next, I make dinner, and for the rest of the night, I read or watch a show (or work more on busy days). I’m in bed by 10 p.m. for my nebulizer treatments, and asleep by 11.

Some days this can feel monotonous, especially with the isolation caused by COVID-19. But ultimately, I have more flexibility with my schedule than I was ever afforded in my youth. I have room for symptoms and bad days, and space for a good amount of work when I’m capable. The agency is mine. I can capitalize on every day for whatever I need.

This ability to live my days for myself and for my body is another reason to be grateful that I survived to see my current age. I’m excited to know that the future is entirely mine to shape.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.