'Respite of a Street Corner': A Year With My Pulmonary Hypertension Diagnosis
May 5 is World PH Day, a global day to raise awareness for pulmonary hypertension, a rare condition that affects the lungs and heart.
“It’s low-impact cardio, like working out with your grandparents,” I would say. Save for another man in his early 20s, I was the youngest person there.
The room was exactly as I pictured it: a sort of hybrid between a high school fitness room and a nurse’s office. Linoleum floors traced the length of the room, with mirrors along one wall, two treadmills, a balance bar, and a smattering of other exercise machines. Multi-colored weights and a computer crowded a desk in one corner.
I felt like an intruder invading somebody else’s sanctuary. A tall, soft-spoken man in his 60s was recovering from heart surgery. A chatty woman in her 70s, with COPD, recently had a lung operation. There was an elderly man who was a lobbyist, a middle-aged woman who worked at an electronics store, and a curly-haired woman on the verge of retirement.
Generations apart, but our lungs all seemed to act the same age. We chugged along on the workout machines while the Food Network hummed on loop. In between exercises I couldn’t help but wonder if I was seeing a glimpse of my older years. It was as if the recording of my life had sped up and I was in a place where I did not quite belong.
On Day One, all patients undergo a six-minute walk test to determine their breathing baseline: how long they’re able to walk without needing supplemental oxygen. I walked for about three minutes before a nurse connected me to two liters of oxygen. Only a few weeks prior I had taken the first steps toward my “new normal” at the ripe old age of 32.
On March 21, 2016, I woke up dripping with sweat, my chest feeling like I was trapped beneath an elephant stampede. Was this a heart attack? I made a quick call to urgent care. “Can you get yourself to the clinic, sir?” An hour later, I found myself lying in a hospital bed with a gaggle of medical professionals huddled around me.
It was a Monday and the start of a busy week on Capitol Hill, where I worked as the communications director to a member of Congress. My mind was elsewhere. My boss had nabbed a speaking role at the White House Water Summit the next day to discuss the California drought. We had prep to do. I didn’t think it would be two months before I would set foot again in my office.
I told my partner not to worry. I called my parents in California to echo the same.
After a long day of bodily probing and a litany of questions from a swarm of medical professionals, I eagerly awaited the signal to head home. It never came. I presented symptoms of severe pneumonia and needed antibiotics and overnight observation. That evening an ambulance (my partner riding in front) rushed me to the ICU at MedStar Washington Hospital Center, starting the clock on a 12-day hospital stay, much of it in intensive care.
The proceeding days were a tedious repetition of physicians, specialists, and a few too many nursing students poking and prodding me while my mom, sister, and partner looked on – a fearful time with more unknowns than answers.
Well, I didn’t have pneumonia.
The doctors realized my body was struggling against slow-burning heart failure that increased with each step, but they didn’t know why. I met more doctors and underwent a right heart catheterization before landing a diagnosis: idiopathic pulmonary hypertension.
I transferred to yet another hospital, this time in Fairfax, Virginia. Hardly out of the woods, moving in the middle of the night felt disorienting, like I lost all sense of time or place. When I arrived, tired and cranky, the nurses pounced with a new central line, more blood tests – a full workup. The revolving cast of characters is one of the more trying aspects of hospitalization, each one eager to hear your medical history. It would be a long night with little sleep.
Pulmonary hypertension (PH) is high blood pressure in the lungs. It is not your typical high blood pressure condition many people treat with medication. With PH, elevated arterial pressures make it harder for the heart to pump blood through the lungs, which can lead to right heart failure. It is a rare, progressive disease with no known cure. Left untreated, some estimates peg life expectancy to less than three years from diagnosis. My own outcome could have been decidedly different and much worse had I not visited urgent care that Monday. Perhaps I should have gone sooner.
Eight months prior, in September 2015, I began feeling fatigue, dizziness, and shortness of breath after walking for no more than five minutes at a time. A series of doctor visits, CT scans, and echocardiograms brought a simple asthma diagnosis, treated with inhalers and a few pills.
That approach did little to improve my condition.
I felt frustrated at my body and angry with my doctors. Even as I complained the inhalers weren’t working, they advised against more aggressive steps to figure out the root of the problem. I had no clue why my body was breaking down or why walking one block at a snail’s pace felt like I’d sprinted the length of two football fields.
I recalled runs through my neighborhood park. Now, I craved the respite of a street corner, often waiting two traffic light cycles to catch my breath and refill my lungs with enough air to get across the street.
Months went by. More tests. By January, the doctors had ruled out asthma but prescribed in-home oxygen to use whenever I felt short of breath. This seemed extraordinary to me. I didn’t know any other young professionals with a fleet of oxygen tanks in their living room. Walking up the stairs to my third-floor apartment remained a challenge; I certainly didn’t have any 5K runs in my future.
When I learned my diagnosis, finally, so many months later, the doctors informed me that because PH is so rare, it is often difficult to catch early. Its symptoms often mask it as some more common respiratory or heart conditions. I would eventually discover others with PH had languished under similar misdiagnoses.
While the hospitalization provided a diagnosis, it also caused a wave of anxiety and uncertainty to crash over me. I was tired of eating bland chicken, not getting out of bed to use the restroom. I had never heard of PH and I was indignant to the medical professionals who had been unable to explain its siege on my body. What made me susceptible to this disease?
No promises were made that a return to the ICU wasn’t in the cards for me. That fate depended on my recovery, how I responded to medication and whether I could keep my arterial lung pressures down. I also had to complete 36 sessions of a rigorous pulmonary rehabilitation program, which led me to the drab linoleum-floored room full of senior citizens.
I arrived a mix of nerves and determination. Upon entering the room, my eyes met with patients on nearly all the machines. Every five minutes a beep would sound. A patient would shout out a series of three numbers: measuring oxygen saturation levels, heart beats per minutes, and how exerted one felt upon finishing the exercise on a scale of zero to 10. “99, 104, 2,” shouted one person. “91, 113, 3,” exclaimed another. It was reminiscent of church-hall bingo, complete with similarly aged participants.
This group atmosphere was intentional: meant to foster a sense of community among people facing similar conditions. However, I wasn’t necessarily in the market for a support group.
I had yet to grapple fully with my “new normal” as one advocacy group describes PH — changing my trajectory while I felt powerless to stop it. I was just getting used to the oxygen concentrator, a 7-pound machine I lugged over my shoulder wherever I went to ensure my oxygen saturation stayed at a healthy enough level.
A team of warm, funny, and compassionate respiratory therapists eventually drew me into this little community. They empowered us to be our own best advocates and often delivered advice with a healthy dose of wisecrack. Feeling more at ease, I befriended the elderly woman recovering from lung surgery. She would even wait for me to finish my exercises so she could drive me from the hospital to the metro station. We bonded over a love of politics.
These sessions soon became the highlight of what were otherwise banal days. I remained out of work, focused solely on my recovery. It felt reassuring, frankly, to be around other people breathing through cannulas, putting on their bravest face to confront their health challenges.
After rehab I switched jobs, partly to see if a new environment would help me manage my health better but also to take advantage of an exciting professional opportunity – serving in President Obama’s administration. I knew this chance might never come around again. Given the recent shift in political winds, I am grateful to have served when I did.
Still, I struggled with how to balance career ambitions with my disease. Nobody at work knew the specifics of my diagnosis. Sometimes it was difficult to keep up with the quick pace. Perhaps I should have been more forthcoming, but I feared the reaction from my coworkers and I did not want to be perceived as incapable or weak. This internal fight rages on as I look for my next job.
Without the structure of rehab, I put off joining a gym and saw the worsening effects it had on my body. I remain preoccupied with the perception of wearing oxygen in public, often to my detriment. It is a ridiculous mental hurdle I just need to clear.
I am an imperfect patient. I don’t always make decisions in the best interest of somebody living with PH and I need to pick myself.
These new limitations challenge my fierce independence, something forged earlier in life. Born two months premature, I began life in an incubator, breathing with the help of a ventilator. I have lived with severe scoliosis for as long as I can remember with the surgical scars to show for it. But PH is its own animal and I cannot help but to internalize my “new normal” as a more immediate sense of my mortality.
This diagnosis has changed how I interact with the people and the world around me. I think about the rhythm of my heartbeat and how a lack of oxygen could affect my organ systems. I am both optimistic and uncertain about what happens next.
My PH diagnosis and I have been together for one year now. With increasing awareness, new treatments and more research – not to mention hope – people living with PH are seeing days turn into years. Many PH patients live decades after their diagnosis. And doctors are starting to diagnose PH much earlier. Other patients sharing their stories about PH give me hope and make me feel less alone.
Will I take oxygen with me wherever I go for the rest of my life? Will I go back to the ICU? Is there a lung transplant in my future? I’m not sure. A year ago I did not even know PH was a disease. What I know now is that PH requires me to adjust, not to give up.
One day during rehab, I reflected on a hike from childhood with my parents and older brother in Big Sur. I was 3 years old and wearing a cast from my recent back surgery. From what I remember, it was a tough hike. But with my parents’ encouragement, I was resilient, pressing on until I was rewarded with the gorgeous view at the top of the mountain.
With my family and loved ones at my side, there is every reason to hope for more beautiful views in the years ahead.
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