Two weeks ago I was diagnosed with heart failure, the traumatizing phrase used to describe the condition in which the heart does not pump blood as well as it needs to. I found the news both devastating and relieving, as if my soulmate was sentenced to life in prison but we had permission for weekly conjugal visits.
Fine, daily conjugal visits.
Nightmares from the several weeks prior to this diagnosis descended back into my consciousness. Walking down an endless, sterile, empty, and somehow foggy hallway, hospital gown open to the font. A red keloid scar covering my entire body. My heart, sliced open and pinned to a rusted table, slowing with each beat. Running from people with bat-like features intent on cracking my ribs (and maybe my skull but the details are a bit hazy). Ryan Gosling in my hospital recovery room.
Okay, so that last one was more of a sex dream than a nightmare.
Several years ago I had recurrent dreams during which I was visited by members of the “27 Club,” musicians who died at the unripe age for which their group is named. The ghosts of Kurt Cobain, Amy Winehouse, Jimi Hendrix, Janice Joplin and Jim Morrison materialized almost every night to warn me that I would not make it to the age of 28. As it turns out, I might not have if not for my pacemaker implantation.
And so the news of my heart failure was nothing if not a relief that my recent slew of symptoms have cause. It was validation that my body and mind are connected and communicate in a profound way. It was proof that I can in fact trust my instincts.
I am 29 years old. I was born with two congenital heart defects: atrial septal defect and mitral valve prolapse. These defects were not discovered until I was six years old. I had open heart surgery to correct the defects. Complications followed my surgery but eventually resolved.
Sixteen years passed before my cardiac issues resurfaced. As a young adult, I fainted frequently and sweat profusely. My resting heart rate was often over 200 beats per minute. I had two surgeries to correct numerous irregular heartbeats. At long last I had a pacemaker implanted to resolve 3rd degree (complete) heart block.
My cardiac history is extensive. It is also mild, comparatively. And now, as my lifelong journey with congenital heart disease meanders down an uncertain road, I feel anxious, afraid and angry.
Congenital heart defects are the most common birth defect in the United States and affect 40,000 (1 in 100) births each year. There are over 40 known congenital heart defects. Little is known about the cause of most of them. There is no cure for any of them. Nearly half of individuals with a congenital heart defect have other physical problems or developmental or cognitive disorders.
Congenital heart defects are the leading cause of infant illness and death. Congenital heart defects are 60 times more prevalent than childhood cancer. Twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for congenital heart defects.
Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly underfunded in relation to the prevalence of the disease. Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research. In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
I cannot help but imagine how these statistics would improve if everyone agreed that congenitally diseased hearts matter.