As told by Karen Curtiss
On an icy February day, a young man suffered a severe brain injury in a motorcycle accident. One of his healthy lungs was gifted to my dad, who was near death from pulmonary fibrosis.
Dad’s nine-hour surgery at “Super Star” medical center, the #1 transplant unit in the world, went so well his doctors predicted he’d be out on the golf course by the 4th of July. A dozen preventable hospital acquired conditions later — seven months after he got his priceless 2nd chance at life — Dad died, never having left the hospital.
We knew that patients should have someone with them during a hospital stay, so my siblings, mother, and I arranged for one of us to always stay by Dad’s bedside for a recovery period estimated at six weeks — tops. We had a vague idea that we might be called upon to speak up as advocates on dad’s behalf, but frankly, we had no idea what that might entail. We simply trusted ourselves to “figure it out” After all, we were all college educated and seemed to navigate life pretty well.
Though I didn’t know the term “patient-centered” at the time, we assumed Super Star, a leading academic medical center, offered such care — that is, care in which the entire system centers on what’s best for patients. This flawed assumption tripped us up over and over again.
One other thing we didn’t know at the time: with Dad’s discharge on the horizon, his fate was sealed with a fall. He was confined to horizontal traction until a neurologist could evaluate him “in an hour or two.” Instead, a full 57 hours passed before the neurologist came to administer a 5-minute test that confirmed Dad hadn’t suffered anything more than a bad bruise. The next morning, Dad was rushed to the intensive care unit with a raging fever and pneumonia, the inevitable result of prolonged traction.
A few weeks later, a blood clot was discovered in Dad’s arm on a Friday afternoon. His doctors decided to “wait and see what happens over the weekend.” So terrified that the clot would travel, Dad barely budged a muscle over the weekend, but even so, the clot landed in his new lung, compromising its function. I asked for a group meeting with his doctors and pleaded: “Please, tell us how can we get in front of anything else that could hinder Dad’s recovery? How can we help?” Arms crossed, their response was that there was nothing we could do.
Then came the infections: MRSA, a deadly staph infection. Then, C. difficile, yet another potentially fatal infection. Both were treated, then re-occurred — relentlessly. On the 4th of July, Dad was nowhere near a golf course.
In September, he was diagnosed with yet another infection, this one untreatable. Mom and Dad held hands for the final time in those final hours.
Despite everything, my mother wanted to thank Dad’s transplant surgeon for giving him a second chance at life and say goodbye. His staff alerted him, and Mom waited three hours, bedside with the body of her husband of 51 years, just to end their last journey together on a gracious note.
The surgeon never came and never called. Finally, she left for home. Dad’s casket was carried in the belly of her plane back to Florida.