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 down and dirty, 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 failed due to the combined effects of chest radiation, doxorubicin, and actinomycin-D at 38
  • April 2008: air-lifted to the Cleveland Clinic where I underwent a heart transplant followed by a 31 day ICU stay, 42 days of ventilatory support, 60 days in the hospital followed by 21 days of intensive physical rehabilitation to learn everything from sitting, then standing up to walking without being bound to another person, and yes, bowel and bladder control all while nursing a right groin wound that could well have cost me my leg had one of my nurses not been observant as well as a strong and effective advocate on my behalf

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 forgotten; always remembered; forever thankful.

 

 

 

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