Thursday, April 16, 2015
Many of us have asked our doctors THE question:
“When will I die?”
“How much longer do I have?”
“Does _____ test result mean that I am dying?”
It’s on all of our minds, and I know many of us have actually received answers to these questions—and then surpassed the physician-stamped expiration date. I know I have, on multiple occasions. My parents were told I wouldn’t live past three days, then it was three years, then it was young adulthood. Here I am in my mid-30s feeling like a cat with nine lives (or should I say six lives now).
I was having a discussion with one of our esteemed ACHD cardiologists about the idea of physician life expectancy predictions. We discussed the appropriateness of such predictions and how harmful they may be. Ultimately, the data is relatively new, no one has a crystal ball, and each case is very individualized, so making a determination on length of life can actually be cruel. Beyond anything the goal of the physician is to be realistic without diminishing hope.
The thing about living with congenital heart disease is that our mortality has always been “thrown in our face” (*for those who have known diagnosis since birth). From a very young age we’ve faced death, whether we liked it or not, and have lived to tell about it—repeatedly.
My best friend once asked my cardiologist “So what’s the goal?” in an attempt to gauge my expiration date. My cardiologist didn’t bat an eye and stated, “the goal is she dies at an old age from something other than her heart.” It was the best answer I’ve heard to THE question.
The reality is that we were all born to die. Death is part of life whether or not we like it, but anyone, regardless of their heart health, can die sooner than desired. We could get hit by a bus crossing the street tomorrow (knock on wood).
So, in order to improve both our heart health and quality of life we need to stop asking “When will I die?” and instead start asking “What things can I do to prolong my life?” That’s a question we can do something with. That’s a question worth asking.
When I first started as an ACHD nurse I was frightened that my role would include watching my peers perish around me. Although I have had some devastating losses, I’m happily surprised by the low rate of patient deaths and the increasing age of my patients. I have a lot of hope and confidence in the longevity of ACHD patients, regardless of complexities.
Besides, it’s not about the length of one’s life, it’s about quality. Any life lived with fear of death dominating is no life to live.
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