My mother, a nurse, was 42 and already the mom of 4 wholesome youngsters once I got here alongside. She’d assumed her baby-raising days have been behind her. For months, she thought she had the flu — however this “flu” didn’t go away; it grew. After the preliminary shock, she ready for one final shock child woman.
All the pieces seemed wholesome. The ultrasounds, the checkups — all wonderful. So once I arrived on Sept. 12, 1995, my mother thought the arduous half was over.
Later that evening within the nursery, a nurse seen my pores and skin had turned blue. That single statement saved my life. Realizing one thing was very incorrect, the hospital ordered a chest X-ray and put me in an ambulance to Upstate Medical in Syracuse. That evening, I had my first coronary heart catheterization: a short lived, lifesaving measure to let oxygenated and non-oxygenated blood combine sufficient to maintain my organs working.
The analysis was tricuspid atresia — I’d been born with just one functioning ventricle, a uncommon congenital coronary heart defect. My coronary heart actually wasn’t constructed to maintain life.
At 9 months previous, I had my first open-heart surgical procedure. At 18 months, I had the second. These surgical procedures, often called Fontan procedures, rerouted my blood circulate so my physique might survive with no full coronary heart.
After that, I grew to become an everyday on the heart specialist’s workplace. Each six months: stress checks, blood work, screens and anxious ready. My mother and father tried to present me a traditional childhood, however “regular” is relative when your chest carries a 12-inch scar and your future is dependent upon machines and medicine.
At eight years previous, I had my third open-heart surgical procedure — this time, to “tune up” my Fontan and implant my first pacemaker. That pacemaker lasted till I used to be 12, when scar tissue shaped on the leads and stopped {the electrical} pulses that saved my coronary heart beating. Cue open-heart surgical procedure quantity 4 for my second pacemaker.
That one lasted till I used to be 16 — and this time, nobody seen when it failed.
My coronary heart charge dropped into the 30s and 40s. At evening, it might cease for as much as 10 beats at a time. I fainted continuously. I knew one thing was incorrect, however nobody listened for months. After they lastly ran the fitting checks, they found my pacemaker leads had scarred over once more. I’d been dwelling with no functioning pacemaker for a minimum of three months.
They implanted the brand new pacemaker transvenously by threading the leads by way of my veins into my coronary heart. That one additionally developed scarring on the leads, that means the generator had to get replaced each three to 5 years as a substitute of the standard 10.
I used to be pissed off and exhausted. I’d had sufficient.
Lastly, I known as Dr. Richard Jonas, the surgeon who had carried out my unique Fontan procedures and probably the greatest pediatric cardiac surgeons within the nation. In 2017, at age 22, I had my first thoracotomy at Kids’s Nationwide Hospital in Washington, D.C.
Dr. Jonas had a brand new thought: place the pacemaker lead in a particular space of my coronary heart to stop scar tissue from forming.
I’m 30 now. I nonetheless have that very same pacemaker, and the lead is 100% wholesome. My first generator substitute is scheduled for March — the longest I’ve ever gone with out one other main surgical procedure.
However right here’s the factor: None of this is able to have been potential with out medical health insurance.
My father was a college steerage counselor with glorious advantages, and once I turned 18, the Reasonably priced Care Act allowed me to remain lined below my mother and father’ plan till age 26. That entry — that protection — saved my life. My final surgical procedure value $179,000. With out insurance coverage, I wouldn’t have had the prospect to inform this story.
Each single coronary heart process, surgical procedure, appointment and check was lined by my father’s insurance coverage due to the ACA.
In March, I’ll be having my first coronary heart surgical procedure for which I’ll be totally chargeable for my insurance coverage and medical prices. I’m scared.
Each election cycle, I watch Republican politicians threaten to dismantle the ACA. They speak about it prefer it’s some faceless coverage debate. However for folks like me, it’s not summary — it’s the distinction between life and demise.
As a result of right here’s the truth: Congenital coronary heart defects don’t have a remedy. They require lifelong, specialised care — surgical procedures, remedy, testing and monitoring. The ACA’s protections for preexisting situations guarantee I can entry that care with out being denied protection or bankrupted within the course of.
Earlier than the ACA, I’d’ve been uninsurable. That’s not hyperbole — that’s a reality.
Picture Courtesy Of Livia Cucchiara
So once I see politicians calling themselves “pro-life” whereas working to intestine well being care, I can’t assist however chortle. Not out of humor — out of disbelief. As a result of the identical folks claiming to defend life are keen to let thousands and thousands of Individuals die for lack of entry to care. However we come up with the money for to construct a White Home ballroom that 99% of Individuals won’t ever set foot in.
Turning 30 shouldn’t really feel like a political assertion — however for me, it does. And this isn’t the top of my medical story. Like many Fontan sufferers, I’ll finally want a coronary heart and liver transplant. My journey of surgical procedures and care is way from over. I actually hope so, that’s.
I’ve already confronted backlash from insurance coverage. My medical doctors must carry out a coronary heart catheterization to evaluate how my Fontan is holding up, in addition to an endoscopy to judge the veins in my liver. These procedures would permit them to see how nicely my coronary heart’s reconstruction is functioning and additional assess the Fontan-associated liver illness I’m already coping with.
Insurance coverage has denied these procedures a number of instances. I’m nonetheless preventing to get them authorised by way of prior authorizations — each with my employer’s insurance coverage and thru Medicaid.
Understanding that I would like these checks to find out the subsequent steps for the remainder of my life is paralyzing, particularly when there’s no reprieve in sight. I don’t know when, or if, insurance coverage will lastly approve these vital procedures — however I can solely hope it’s quickly.
Picture Courtesy Of Livia Cucchiara
I’m one of many fortunate ones. I had privilege, advocacy and timing on my aspect. I had mother and father who fought for me and the ACA to guard me. However I’ve met so many others who haven’t been as lucky — households pressured to ration remedy, skip appointments or danger every little thing to maintain their youngsters alive. I’ve spoken with households whose kids have been born with the identical or perhaps a less-severe congenital coronary heart defect than I’ve, and a few of these kids aren’t with us anymore.
Making it to 30 with a congenital coronary heart defect — a rebuilt coronary heart that beats because of science, know-how, coverage and sheer persistence — is greater than a milestone. It’s proof that well being care entry saves lives.
If that issues to you — if the lives of individuals with power situations, uncommon ailments, or preexisting situations matter — then be sure to let your elected officers know, and naturally, use your voice on the poll field every time potential.
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