Stanford’s Medicine X is a catalyst for new ideas about the future of medicine and health care. This new series, called The Engaged Patient, provides a forum for some of the patients who have participated in or are affiliated with the program. Our inaugural post comes from Sarah E. Kucharski.
Rivulets of deep brown iodine trickled across the patient’s body as nurses swabbed with sponges and unfurled blue surgical drapes. I contemplated his bare feet. I wondered if they were cold. I wondered if he wore no socks so that the nurses might palpitate for his dorsalis pedis and posterior tibial pulses. And I thought about how many times the patient on the operating table had been me.
When given the opportunity to observe surgery, I had accepted eagerly. One hardly could have called it an exercise in learning self-care techniques — no matter how empowered I am as a patient, even I draw a line at doing by own arterial bypass. Rather I wanted to see how the other half lived. For once I entered the operating room wearing scrubs and surgical mask instead of an open-backed gown and an IV line pushing Versed through my veins.
My conscious presence meant I represented not just myself but my fellow patients who clamored for meaningful engagement. There is much talk about being able to view health care and the medical establishment from another perspective, but few truly have an opportunity to do so. It has been pointed out that doctors attend school to learn how to be doctors, yet patients do not attend school to learn how to be patients. More importantly there is no school to teach doctors how to be patients and, save for those patients whose condition manifests early enough to motivate medical school, no method of teaching patients how to be doctors. Collaborations to re-imagine health care for our joint benefit will be ineffective unless we expand medical education to regularly include the patient, which will facilitate empathy and improved health literacy through shared experiences.
As surgery preparations continued, the operating room nurses appeared apprehensive they were going to share an experience with me. I had signed on with a go big or go home philosophy — the aortic root and mitral valve replacement would be my first surgery. Each nurse’s eyes widened for two tell-tale seconds when I told them my novice status, and their voices caught as they tried to mitigate surprise, “Ooh.” Their apprehension meant I had something to prove. There would be no circumstance under which I would faint.
And with the loud whine of the sternum saw, we were underway.
“Sarah, why don’t you come up here?” called Marc Katz, MD, a nationally recognized cardiac surgeon, medical director of the Heart and Vascular Institute, and head of the Minimally Invasive Surgery Program at Bon Secours Richmond Health System.
As I approached my station above the patient’s head, Katz cautioned me about the one thing I had failed to consider — smell. As Katz’s surgical assistant cauterized tiny vessels in the separated sternum, there came a familiar singe. It was the same as when I would roast my dog’s cattle bone over a campfire in my backyard.
The patient was so very still, his face shielded from the surgical field but not from me. I paused. We were approximately the same age. In that moment, he was me, and I was him. In my heart, I thanked him and promised I would watch out for his. Right foot first, I stepped onto a small metal platform, knowing my next field of view would be one I could never unsee.
His heart beat vigorously torquing to the right under the pericardial sack’s milky film, and the rest of the world ceased to exist. I was mesmerized. The sack was cut. Its fluid drained. The heart-lung machine hummed. And the heart, cooled with crushed ice, eventually stopped. I was hooked.
Who wouldn’t be?
For almost six hours, I did not move. Every cut took apart a piece of me, and every meticulously counted stitch put me back together. Katz worked in near silence, confident yet intent. His team anticipated his movements. His occasional requests instantly were met. It was art just as much as it was science.
With each stitch additionally glued and blood flow restored the flaccid heart gradually reanimated — its beat visibly smoother than when we began — and when satisfied that its rhythm was sustained, Katz and his assistant began to close.
I walked with Katz to the hospital lobby where the patient’s wife waited alone and stepped aside for their private post-surgery consult. Therein I was conflicted. I wanted to recount to her all I had seen and felt. I wanted to tell her everything had gone perfectly. I wanted to tell her about my own surgeries and recoveries, about fatigue and pain and personality changes so often seen after cardiac procedures. I wanted to tell her to be sure to celebrate even the smallest victories. I wanted to tell her to make sure she took care of herself too.
But I was not qualified.
Which isn’t entirely true.
I was him, and he was me, and we patients are you, and you, and you.
Sarah E. Kucharski is a consultant, public speaker and advocate fostering the patient voice in medicine through design thinking for innovation and social media. She has a BA in journalism, an MA in liberal studies and a certificate from Columbia University’s Narrative Medicine program. She is coordinator of ePatient programs for Medicine X and CEO/chairman and founder of FMD Chat, a peer-to-peer support organization for patients diagnosed with fibromuscular dysplasia. She can be followed on Twitter: @AfternoonNapper and @FMDchat.
Photo by Shannon Conrad