Editor’s Note: This account describes an unexpected adverse medical event in the life of a loved one that made the storyteller’s continuing participation in her training process difficult. As a result of the ordeal, valuable decisions about current and future professional life were made.
“He will likely be an organ donor.” Those were the words I heard as we were sitting in the emergency department after I witnessed my very physically fit life’s partner, “C,” have an apparent stroke. It came after we lifted a heavy object together.
After rapidly reaching the emergency department, the initial reading of the CT of C’s brain was that it was “normal.” The ED doc got another opinion as did my mother, an orthopaedic surgeon, in another city. She discussed C’s condition with a neurosurgery colleague who delivered his assessment of my partner’s possible impending donor status. I was stunned.
The proper diagnosis, however, had a less grim prognosis. It was a vertebral artery dissection leading to a basilar artery stroke. The vessel dissection likely occurred over time and a blood clot formed. The clot dislodged and became mobile after the exertion of lifting. This resulted in brain ischemia with “locked-in syndrome.” An interventional radiologist intervened and within an hour of arriving at the ED, the clot had been removed from C’s vessel, and circulation to the brain restored. The spectrum of emotions I experienced was staggering.
In the span of that hour, I tried to process the information myself, advocate for my partner, so he would receive the timely care he needed, and contacted both of our families to explain C’s condition. They were hours away by air. Oh yes, I was also on call for orthopaedics and my pager was especially active during this timeframe. Once C’s immediate danger had passed, I spoke to my attending who agreed to take over my call responsibilities, so that I could be entirely “present.”
In the ICU after surgery, C was able to squeeze my hand in response to my command. I was tremendously relieved. Our families arrived the next day.
On post-op day two, because he had improved markedly, C was moved to a patient floor and into a room without a call light. He was given an actual “bell” and was told to use it as necessary. Yes, ridiculous! The expectation was that a neurologically impaired patient should be able to call for help on his own. It took some time, but I got a nursing supervisor to move him to a new room with monitoring and a functional call light.
A day later, C decompensated. He became unresponsive and had agonal breathing. My concern was Cushing’s Triad, a late-stage indicator of severely increased intracranial pressure and imminent brainstem herniation. The hospitalist decided it was probably opioid overload as C was on an opioid for his severe headache. Narcan had no effect. He decided to “go talk to a neurologist” instead of ordering an emergent CT scan. I connected with a neurosurgery PA that I knew, and they spoke to their attending neurosurgeon. They came immediately to see C and diagnosed him with an “impending herniation” after the repeat CT scan. He was rushed to the OR for a craniotomy.
At surgery, it was noted that he had already partially necrosed his cerebellum. The diseased tissue was debrided. Post-op, he had no bowel or bladder function, but did have his baseline cognition.
C progressed daily to the point where he could be released to a rehab center, which was two hours from the site of my general surgery trauma rotation. For updates, our families sent me videos of C each day. I was able to get away to visit him in person only once during that month. I felt very isolated.
C worked hard, surpassed expectations, and was discharged from rehab three weeks early utilizing braces with ambulation. His bowel and bladder function had returned. C’s father was a firefighter in another state, who sacrificed time to live with us for several months after C returned home. This allowed me to work and fulfill my training requirements.
Presently, two years down the road, C has gait asymmetry and difficulty with proprioception and fine motor movements in the right upper and right lower extremities. However, he is cognitively fine.
On the positive side, this experience has brought us closer. We are now engaged, and each share in the joy in living. Our wedding will take place next academic year when I am a chief resident. We will be moving together for the pediatric orthopaedic fellowship. Our future together looks bright.
So, what have I learned from this harrowing experience and how has it changed me?
- We must advocate for ourselves and our families when navigating the health care system. Do not be afraid to ask questions and seek second opinions, even in an emergency. This motivates me even more to be a strong advocate for patients who do not have high health literacy.
- Especially in adverse situations, ask questions. Avoid “internalizing.” Don’t fear that you may be viewed as “not strong” or “emotional.” Understanding is key to decision-making.
- Despite adversity, I have learned to show up and be positive at work, so I can do good for those who rely on me.
- I am now more aware than ever about patient’s access to care, the limitations imposed by insurance or lack of it, and health literacy. I seek to work around these obstacles on behalf of my patients.
- Terrifying experiences can lead to more joy in being alive.
- I don’t need to be the smartest person in the room, but I will strive to be the kindest.
- Never underestimate the power of kindness. The kindness and attentiveness of others helped C survive his illness and for him to understand that recovery was/is possible.
- I am now more certain than ever that my calling is pediatric orthopaedics. I want to deal with anxious families with compassion, allow them to feel heard, and to engender their trust
- We must all work to make life better for each other as trainees and colleagues, so those who follow won’t encounter the adversity we did.
