“Breathe in. Breathe out. Hold your breath.”
The computerized female voice with a semi-British accent filled the MRI chamber, while the clanking and the whirring of the machine sounded all around me, muffled only slightly by the ear plugs the technicians had given me before I laid down on the table. My eyes were squeezed shut, hopeful to avoid a fit of claustrophobic panic, while my arms were held tightly in place by the straps that also held the X-ray plate against my chest. My lungs were silent, still holding my breath.
I inhaled as much as the anxiety in my chest would allow, preparing for the next bout of breath holding. The back of my mind raced with fear and with questions, while the front of my mind waited for instructions.
“Breathe in. Breathe out. Hold your breath.”
I did as I was told. I had repeated this cycle some 65 times already, cramped into the MRI tube, my eyes afraid to open, my heart racing.
The same heart they were taking a million pictures of…
The same heart that was the reason I was cramped into this tiny tube…
“Relax,” the voice commanded.
Relaxing was not an option.
After probably another 50 rounds of this, I was finally electronically ejected from the MRI tube, allowed to dress and then instructed to sit with the cardiologist in front of six or seven computer screens displaying different black-and-white versions of my heart. My heart that found joy as a wife and a mother of two beautiful little girls… that was now the cause for concern … that I was now afraid was going to fail me, and them.
The cardiologist showed me my heart pumping from various angles. He showed me the narrowing in my aorta and called it a “coarctation.” He explained that this was a congenital heart defect, meaning I had had it since birth. He told me it was lucky that we had found it now, instead of when I was older. But I was already 37 years old.
And I was certain that “lucky” was not how I was feeling. Stupefied, yes. Afraid, yes. Lucky—not really. I asked the doctor if we were almost finished, since I still had enough time to pick up my daughters and take them to school. I was trying to keep them in their “normal” routine as best I could, while my life suddenly felt anything but.
A few days later, I was called by the cardiologist who told me I would need open heart surgery. I sat in a bathroom stall in my office and cried.
Soon after, I had a meeting with a surgeon to discuss OHS. Following that meeting and based on the best advice we have ever been given, my husband and I decided, with a huge amount of energy and fear, to get a second opinion. Through the phenomenal assistance of the Adult Congenital Heart Association, I was able to identify a medical team with advanced experience and expertise in dealing with adults with CHD, whose team of specially-trained physicians reviewed my medical records and decided that I was a candidate for a less invasive stent procedure.
My husband, children and I packed up our minivan and drove approximately 700 miles. On January 18, 2013, I was given the greatest gifts imaginable: A repaired heart, an explanation of the mysterious symptoms and health challenges I had faced for so long, and a new lease on life.
A year later, my slightly-defective-now-expertly-repaired heart is filled with gratitude and a desire to do something to bring attention to the issue of CHD. To honor the 37 years it took for me to get a diagnosis, I have set a goal to run 37 road races over the next 37 months to raise awareness and money for ACHA. Athleticism is not one of my strengths, so each mile of this journey will be a challenge for me. Perhaps that makes it all the more special.
Each mile I run will be, in part, for myself and for my health. I will run for my husband, children, and our family, who went through this journey with me, and in celebration of the fact that my future as a mother and wife looks so much brighter. But, mostly, I will run for those with CHD who cannot run, and for whom just living to the age of 37 may be a dream.
So now, one year and many miles later, I can breathe in, breathe out, and – yes, finally – relax. Well, until my next run, anyway.
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