It starts with a blessing.
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 entirely preventable medical complications later — seven months after he got his priceless second chance at life — Dad died, never having left the hospital.

Nothing in life prepares us.
We knew that patients should have someone with them during a hospital stay, so my five 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. As we learned, life skills were of no use in supporting dad’s care.  We were in foreign territory, where a foreign language was spoken, and no guidebook for dad’s care journey from surgery to discharge.

Our plea to help.
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.

Infections claim hope.  
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, beside 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 home to Florida.

No one should be a statistic.
When Dad died on September 23rd, he was one of a thousand deaths that day—and every day — from common medical complications that could have been prevented. I joined The Care Partner Project to help other families be more informed, engaged, pro-active and confident when their loved ones are counting on their help through medical care. It’s my way of transforming our family’s grief into something good for other families. I know that’s what dad would have wanted.

Get the care you want for the people you love.
Please share The Care Partner Project with your family and friends.  If you are able, please also support our work with the gift of your time, talent or any donation amount that’s comfortable for you.

Kind regards,

Karen Curtiss