Three years ago, my brother, Nolan, went to an emergency room in Edmonton, Alberta, Canada with complaints of severe and unexpected pain shooting up into his jaw and across his upper back. He also disclosed a history of serious cardiovascular disease in our mom, whose heart attack in 2017 went unrecognized after presenting with atypical symptoms. Standard tests investigating for a cardiac cause to his symptoms were found to be “normal,” however, and he was released with a diagnosis of his migraine headache migrating to his jaw. As a relatively healthy 31-year-old, with no known underlying conditions, he came away from the experience feeling foolish about his complaints and vowed that he would rather die at home than go back to the emergency room.
Nolan continued to feel unwell and experience abdominal pain, so he spoke on the phone a couple of days later with his family physician, who booked him in for an appointment the following week to look into stomach issues. His physician did not suspect cardiovascular issues as Nolan had just had a blood test for cardiac enzymes, an electrocardiogram and a chest x-ray done in the emergency room of a hospital renowned as a world leader in complex cardiac care and surgery.
Four days later, unable to stand the pain and vomiting but also unwilling to go back to the emergency room, Nolan went to a medi-centre, where he was advised that he had gastroenteritis and given pantoprazole to take to settle his stomach.
A few hours later, feeling a little better at this point, Nolan went to take a nap because he was really tired and never woke up again.
When I entered his apartment on the morning of May 31, 2020, after repeatedly unanswered calls and messages, I held out hope that Nolan had woken up, called an ambulance, and had simply not been able to let us know yet.
An aortic dissection killed my brother, but a chronically underfunded and overburdened medical system denied Nolan the opportunity to be taken seriously for unexplained pain riddling his body. As his family the guilt of the “what-if’s” weighs heavily on us.
Was there anything to make of his propensity to bruise, shoulder and knee problems, long slender fingers and experience with a semi-detached retina? What if we’d been more vocal in asserting a family history of atypical and unexplained cardiovascular events? What if he had arrived in emergency by ambulance or been allowed to have someone go into emergency with him? Could a CT scan or MRI have shown anything the bloodwork and chest x-ray did not? With the culmination of all the events leading up to this point, what if any of the doctors had had the mindset to Think Aorta?
Almost a year after Nolan’s passing, we received the official report from the Medical Examiner’s office advising they determined the official cause of death to be a dissection of the ascending aorta. Toxicology screen for drugs only found a small trace of the pantoprazole Nolan had been prescribed. On the second anniversary of Nolan’s passing the Medical Examiner advised us genetic testing performed provided no definitive genes associated with aortic collagen disease but there were some variants of uncertain significance identified, and we should seek genetic counselling, which we are now scheduled for nearly a year later.
Nothing will bring Nolan back, but our hope in sharing Nolan’s story is that it might help someone in the future, whether in recognizing the signs of an aortic dissection, or raising awareness for doctors to Think Aorta for unexplained pain. We have reached out to all the doctors involved to make sure that they were aware of the outcome and to try and better understand how the events unfolded. We understand that there are many risks associated with emergency open chest surgery to fix this condition but if it had been diagnosed earlier and monitored, it might not have come to that. Every year we participate in the Heart and Stroke Ride for Heart in honor of Nolan, as Nolan’s High Rollers. We are grateful for a community that continues to lift us up, to remember Nolan and to help raise awareness regarding aortic dissections. ~Amanda
My heart aches for Nolan's family. We need to spread the word and get the health system to Think Aorta and get them to request CT scans and save lives.