A Lesson in Learning To Be a Better Patient
As CHD is a lifelong condition, an important aspect of transparency is knowledge of a complete medical history. CCHD welcomes Meghan Chell, a CHD survivor, who speaks about her recent challenges in finding the right care as an adult CHD patient.
If you don’t learn your medical history, you’re doomed to repeat it.
Three years ago, my life as a mostly-healthy person fell apart around me. Sure, I was born with coarctation of the aorta and had three surgeries as a child, but for over 20 years I’d been incident free. I rode my bike, did yoga, hiked, swam, basically did whatever I wanted, and every year grew more distant from my congenital condition. I went to my annual visits, and every now and then had to explain the source of my sternotomy scar, but acted as though my struggles with CHD were behind me.
Until I was suddenly reminded that they weren’t.
I was 33 years old, recently engaged, and working as a wastewater and remediation engineer in Portland. A typical fair-weather cyclist, I started biking to work again once the “frozen mix” of winter turned into the random rains of spring. I was having trouble with uphill stretches of my commute but simply wrote it off as loss of stamina due to winter laziness. When I had an offer of interesting but strenuous field work at a remote mining site, I scheduled my annual visit to get my cardiologist’s seal of approval before committing.
It started off as a typical visit: an echocardiogram to be followed by an appointment with my cardiologist. He’d overseen my care since I was in recovery from my last coarctation repair in 1992. We had discussed transferring my care to another doctor, but decided that it was best to stay with the doctor who was most familiar with my case. He was in California where my family had moved right after my heart surgery, so I used the travel as a chance to see friends and family in the area.
I knew something was wrong before the echo was halfway through. The technician was warm and gregarious, so the two of us typically gab throughout the test. But at some point he became quiet and focused. I waited for an hour while my doctor was reportedly reviewing my files before I finally learned what happened. My 21-year old coarctation repair, an ascending to descending aortic conduit, had clotted and was no longer providing a bypass for blood flow to my lower body. This explained my fatigue and headaches with exercise – my lower body had insufficient blood flow, while my upper body was hypertensive. He proposed a quick and easy solution – a stent to widen the narrow portion of my aorta, which could be performed with a catheter, and I could be back to work within a week. First more tests to confirm – an MRI, a fit test, and blood work. Then we’d schedule for the procedure in Southern California.
Fast-forward three months. I’ve had all my tests and dealt with the fragmented, back and forth communication with my doctor through his receptionist. Once the diagnosis is finally confirmed, I travel to Los Angeles for the cath procedure. While in recovery and barely conscious, the surgeon then tells me that they didn’t place the stent. Why? Apparently there was no need! My aorta was only slightly narrowed and shouldn’t cause a restriction. So the aorta wasn’t the problem! I protest as much as I can – the tests, the conduit being clotted, my symptoms. He shows me a grainy photo from the cath procedure and points to measurements that I can’t see through the fog of anesthesia. He says we’ll discuss this further when I’m more awake, but he doesn’t reappear that day. Eight hours later I’m driven to my father’s house, where I promptly have a good cry and fall asleep.
When I got home to Portland, I put my recovery time and mounting frustrating to good use, investigating local cardiologists for more engaged care. I found a clinic at Oregon Health and Science University, a mere 3 miles away, which had multiple adult congenital specialists. I also requested records from my California cardiologist to familiarize myself with the details of my 30-year medical history, many of which I only barely recollect. When they arrived, I was shocked to find that there were only records through 2008. I realized that when my doctor was supposedly reviewing my files, he was in actuality probably trying to locate the other 16 years of them! I also learned that my coarctation is mainly due to a hypoplastic, inflexible portion aorta, presumably due to scarring from my original repairs in 1984. Though it looks fairly normal at rest, it doesn’t expand as it should during exercise. Had my doctor known my medical history, he would have known that a stent was not a viable option and never would have given me the false hope of a quick and easy fix.
In retrospect, though I do hold my doctor accountable for being unfamiliar with my history when he recommended this unsuccessful procedure, I realized I needed to be a better patient. I had lived in a dream world for over two decades, and hadn’t kept up to date with my care or what was best for my condition. Had I been seeing an adult specialist, they would have been monitoring for this failure, and could have prolonged the usefulness of my conduit. It’s a heavy weight to bear, but we survivors and family members of congenital heart disease need to remember that we have to be the most knowledgeable about our specific conditions and cases. As such, we need to always be active members in our treatment which sometimes means questioning an easy solution when we know it isn’t the right one.
Meghann is a congenital heart disease survivor, born with coarctation of the aorta and a bicuspid aortic valve. She lives in Portland, Oregon and works as an environmental engineer. Her focus in CHD activism includes patient engagement, transparency, and medical records availability.