Charity Tillemann-Dick fell in love with opera at about 5 years old, when she saw a production of "Hansel and Gretel" in Denver. By the time she was 19, she was studying at a prestigious musical academy in Europe and preparing for what her mentors said would be a great professional career.
And then the trouble started: Tillemann-Dick was diagnosed with Ideopathic Pulmonary Arterial Hypertension and warned that without a lung transplant she would die within a few years. It took two such transplants, the most recent in 2012, to return to professional singing. She recounts her story in the new book "The Encore," and tells Colorado Matters about how she met the daughter of the lung donor who provided her second set of lungs, and how they recently performed a duet together.
Read An Excerpt of "The Encore"
She looks in my ears, throat, and eyes. She tests my reflexes and listens to my heart for a few moments longer than usual. Then she orders an EKG. The nurse places cold, studded stickers on my side, chest, ankles, and abdomen and I watch as a needle traces a jagged line onto the sheet feeding out underneath it. When the test is done, the nurse takes the sheet and leaves the door cracked behind her. I hear the doctor discussing me over the phone down the hall.
Finally, she returns with my results. Sitting down, she first suggests that I not research anything she’s about to discuss with me on my own. After this disclaimer, she tells me that she believes I have idiopathic pulmonary hypertension, or PH. The doctor doesn’t want to give me too many details until she can confirm her diagnosis with Dr. Chris Lang, one of the region’s top cardiologists. For the time being, she just tells me that she won’t
be able to sign my health release forms.
As soon as I get home, I sit down at our family desktop and Google “pulmonary hypertension.” I click on the first result. Pulmonary hypertension is caused by a thickening of blood vessels in the lungs, which impedes oxygen absorption and increases blood pressure within the heart, making physical activity difficult. In its most advanced stages, fainting can occur with exertion.
While PH is relatively common as a secondary condition of everything from pregnancy to AIDS, I’ve been tentatively diagnosed with the idiopathic variety of the disease, for which there’s no known cause or cure. Pregnancy with PH is fatal and, without a lung transplant, nearly 70 percent of all PH patients die of heart
failure within five years of diagnosis. There are fewer than seven thousand cases of the disease worldwide. So I guess I really am one in a million, I think wryly to myself.
I stare at the screen, feeling sick in more ways than one. This can’t be right. I click on another search result, this one belonging to a major university hospital. It confirms all the statistics. I do the math. I’m twenty years old. Somewhere between twenty-two and twenty-five, I’ll probably die. I haven’t been in love yet—I’ve
never even kissed a boy. A mission is probably off the table. Children, out of the question. I don’t have ten years to become a great artist. I hurt so much that I start to laugh. Soon, tears well up and I’m left with only silent, lonely sobs.
Inhale. Exhale. Grabbing the home phone, I retreat to the basement bathroom. What do I do? The shortness of breath, the fainting, the heart palpitations; this diagnosis answers so many questions I’ve had for years. In a strange way, it’s a relief. It’s not all in my imagination. I’m not crazy. Something is really, really wrong. My reflexive expectation of calamity, inherited from my Jewish grandparents, has been borne out to great effect.
Reprinted from "The Encore: a memoir in three acts" by Charity Tillemann-Dick with permission of Atria, an imprint of Simon & Schuster, Inc. Copyright (c) Charity Tillemann-Dick, 2017.