Heart Failure: the Backstory

In reviewing my posts, I realized that there isn’t a post explaining why at 38-years of age my heart failed, and ultimately, died.

So, here’s the bullet point backstory:

  • 1978: diagnose with Ewing’s sarcoma, a soft tissue cancer; I was 8- years-old in the third grade
  • My parents were not given much hope that I would survive beyond 6 months
  • The recommendation was that they take me home, and the medical team would keep me comfortable as I died

“To try and fail is at least to learn; to fail to try is to suffer the inestimable loss of what might have been.” ~Chester Barnhard

  • My parents would not fail to try. Having their little girl and her future to gain, they registered me on a clinical trial involving treatment with multiple chemotherapeutic agents (vincristine, cytoxan, doxorubicin, and actinomycin-D) and high dose radiation to the primary tumor which was located in my left chest wall
  • Seven cycles and 30 radiation treatments later, I was quite miraculously still alive.
  • I went on to outlive the follow-up portion of my protocol at which point my pediatrician in collaboration with my pediatric oncologist recommended annual check-ups and a chest x-ray.
  • At 5 years, my team would have liked to say I was cured; however, with Ewing’s one “never knows”.
  • Me, what did I know at the time; I mean seriously, I had been sick, really sick, I took the medicine, and as far as I was concerned the Ewing’s was in my past.
  • With time, I would learn that cancer treatment comes at a price [and] the price was long term side effects (aka late effects)
  • I learned that I carried a very high risk for heart failure, second malignancies, infertility, and restrictive lung disease.
  • I went on to graduate from high school, college, and graduate school and became a pediatric oncology nurse, then nurse practitioner.
  • I married at 24 and we welcomed
  • Our first born, only born son when I was 33.

So far, so good.

  • December 2007: valve repair surgery that unmasked a heart that was damaged beyond repair
  • February 2008: my heart began to fail Due to the combined effects of chest radiation, doxorubicin, and actinomycin-D at 38.
  • April 2008: I underwent a heart transplant

There are no words adequate enough to express my gratitude to and for my donor’s family. As I stand amazed at their generosity amidst their catastrophic loss, I consider it an honor and a high privilege to carry her heart within my chest.

Never forgetten; always remembered; forever thankful.

 

 

 

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