Our Journeys

PHAmerica Honors Essays

Caroline Clemens

"I’ll never understand why it took that long, but when compared to some of my friends with scleroderma, two years of misdiagnosis isn’t that uncommon."

- Caroline Clemens

While waiting for the ferry to tour Alcatraz Island, my grandmother and I treated ourselves to a couple of Cokes on a beautiful summer day in San Francisco. The air was warm, the vacation was fun and we were excited to tour every inch of the celebrated city. I didn't think much when I had to ask her to open the plastic Coke bottle.

Shortly thereafter I returned home to start my third year teaching high school English in Allen, Texas. A new year brought new hope. This year was going to be a great year. And it was. I had no complaints, school-wise. At home however, mundane chores started to take their toll. Drying my hair became increasingly difficult. Turning my steering wheel was a daily reminder of a bizarre stiffness.

So, I took action and spoke to my general physician who later referred me to a rheumatologist. A few months later I had a diagnosis – arthritis. It bemused me, but I could handle it. So what; I take a few pills a day and I feel fine. At 23, I found it odd to be diagnosed with arthritis, but I could handle it. Two years passed and I took my pills, went to my appointments and continued teaching. It took two years for my rheumatologist to even mention the word scleroderma. I'll never understand why it took that long, but when compared to some of my friends with scleroderma, two years of misdiagnosis isn't that uncommon.

In the meantime, the years passed and I worked hard at teaching. It was my dream job. I loved my connection with students, my friendships with colleagues and my ability to pass on my love of learning. Life was great again, minus taking a few pills here and there.

Then, in 2007, teaching wasn't really enjoyable anymore. Walking upstairs to my classroom became a difficult task, and suddenly, walking to the front of the classroom left me breathless. At home doing the laundry, tying my shoes, dressing myself – all of these ordinary tasks took the wind out of me. It wasn't long before walking down the halls in my school became tiresome and daunting. I couldn't even walk up the handicap ramp from my car to the school's entrance without stopping to catch my breath.

Under the guidance of my new rheumatologist, I took my first pulmonary function test. What followed were a series of tests that were foreign to me. Echocardiogram. Cardiac magnetic resonance imaging (MRI). Right heart catheterization. And they all showed what had been bothering me. The diagnosis meant little to me, as I had never heard the term before – pulmonary hypertension secondary to my scleroderma.

More pills. At first, they made me feel better, but eventually I had to add more and more. Between a handful of pills and a horrid clinical trial that left me grossly underweight, in 2008 I ended up on a continuous intravenous (IV) medicine called Flolan.

It was then that life was good again. I could breathe! I could walk! I could do anything! I loved teaching all over again. Mixing my medicine every night was a chore, but it was absolutely worth it to have my life back. I thanked God for my doctors, my medicine, and my newfound freedom.

Sadly, only a year passed and my health started to decline again. With scleroderma, pulmonary hypertension and a continuous IV, I didn't know it could get worse, but it did. September 6, 2009 marked my first day of an extended stay in the hospital and forty three days later, I left University of Texas Southwestern Medical Center with a new peritoneal catheter for at-home dialysis. Losing my kidneys early in the school year set me back more so than I imagined, and I began what would be a year of sporadic teaching. Nightly ten hour dialysis took every ounce of energy out of me. Likewise, between cleaning my two catheters (one for my Flolan and one for dialysis) and mixing my IV medicine for my PH, my boyfriend and I spent at least an hour at home prepping for my life saving daily therapy. My body and mind were weak and exhausted.

I lied to myself and said I could return to teaching in January and I did. My school had hired a co-teacher and together we taught. I only lasted two and a half months before my stroke. My intensive care unit (ICU) nurses welcomed me back with open arms. Two weeks of my life had passed before I came to in my hospital bed. Recovery, rehabilitation and physical therapy were imminent and I quietly spent the rest of the school year at home.

"Early on in this adventure I’d ask, “Why me?” But those thoughts have since left my mind. Living with scleroderma, battling pulmonary hypertension, losing my kidneys, surviving a stroke – these are all merely chapters in my life. They don’t define me."

- Caroline Clemens

My body had been through so much. My mind was mush. I was shockingly skinny and frail.

I suppose I could look back at all my misfortune and feel sorry for myself. Early on in this adventure I'd ask, "Why me?" But those thoughts have since left my mind. Living with scleroderma, battling pulmonary hypertension, losing my kidneys, surviving a stroke – these are all merely chapters in my life. They don't define me. I'm not a sick person. For me, scleroderma was the birth of a thousand tears, a handful of painful memories and a few mental and physical scars. But, it has also served as a vehicle for my religious awakening, my intensely close relationships with my family and friends and my eternal positive outlook on life.

It is overwhelming to think of where I've been and where I am now. Today I'm back working full time and living the life that I want. I'm so grateful to be able to share my time with my students, family and friends. And now, instead of asking, "Why me?" I ask, "Why not me?" After all, people keep saying that I'm a living miracle, and I'm beginning to believe them.


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