The theme for August is finances, and how the families affected by CHD pay for all the healthcare that goes into a CHD patient. This month we will be sharing stories and advice from people of all walks of life who come with many different perspectives. This week we will hear from a patient who shares their personal journey in paying for CHD, and all the struggles that comes with. Finances can be a very personal topic, and due to the personal nature of this week’s post, this contributor has asked to remain anonymous.
When I was 32, I learned that my childhood congenital heart defect (“CHD”) treatment bankrupted my parents. When I was 34, my CHD treatment nearly bankrupted me. I guess as a child, you never really appreciate your parents’ struggles, until their struggles become your own.
I was born a “blue baby,” grew into a “zipper kid,” and have now lived long enough to be labeled an Adult with Congenital Heart Defect (“ACHD”) survivor. My childhood was spent in and out of hospital; I never really gave much thought to it as a child – it’s just the deck I was handed. My family never had a lot of money, but my parents never burdened me with the financial struggle that my CHD treatment placed on them. In those days, zipper kids were uninsurable; I never realized the gravity of that until I survived into adulthood.
I still consider myself a zipper kid, even though I am fortunate enough to be an ACHD survivor. I saw a pediatric cardiologist until I was almost 30 when my insurance forced me to see an “adult cardiologist.” My compelled transition into adult cardiac care led to a series of struggles, among the most palpable, a financial struggle. The CHD financial struggle is the topic of this blog today.
I recognize in writing this article that the term “struggle” is an unfortunate, yet fitting term. In all respects, I am extremely blessed – I have a roof over my head, clean water, and food. I was blessed to find doctors who could help correct my purple lips, fingers, and toes. I have survived 9+ heart related surgeries, including 4 open-heart surgeries. I generally still have enough energy to work; I was able to pursue an education. I know now, more than ever, that many ACHD survivors cannot say the same.
I recently read an article stating that ACHD care is among the most expensive in the world. At 34, I had a painful reminder of this fact. I note that for this blog, I have selected one experience, among many. My ACHD care/treatment has emptied my bank account more times than I care to remember.
This particular story begins on a sunny afternoon quite like any other. After lunch I became suddenly very ill: sweating, fever, chills – I chalked it up to the horrible flu going around and went home, and got into bed. I slept all weekend and then called into work on Monday…and then Tuesday. My primary care doctor opined that I had the flu.
My symptoms persisted and eventually my ACHD cardiologist admitted me to the E.R. Turns out I did not have the flu; I had endocarditis, a serious bacterial infection that was attacking my Melody Valve. Although unheard of to me at that time, endocarditis is apparently common among CHD survivors. My endocarditis infection kept me in the hospital for two-weeks, in which my insurance was billed over $350,000. Upon release, my treatment continued for six more weeks with at-home intravenous antibiotic infusions; my insurance got a bill for over $10,000 for that.
Over the years my insurance premium has been on a steady increase. I never had the luxury of employer-paid insurance because their HMO plans never covered any of my CHD providers. So, despite being employed full-time, I had to maintain my private PPO insurance to survive. This year, my insurance company raised my premium from $798 per month to $987 per month. My insurance company also increased my annual deductible from $12,000 to $20,000.
My bout with endocarditis resulted in over $10,000 in medical bills. Upon returning to work after hospitalization, I was promptly fired…just as I have been after every other major heart-related incident in my adult life. (yes, discrimination, it happens all the time and yes, I know it is illegal.)
To pay for my medical bills, avoid bankruptcy, and keep a roof over my head, I had to zero out my bank accounts and sell my car. The stress from that financial burden almost landed me back in the hospital. I was fortunate that the unemployment board took pity on me; I was able to buy a few groceries. Because of my CHD, I had hit the proverbial bottom.
I write this blog not as a doom and gloom or pity piece, but as an acknowledgement of all those zipper kids – and their parents – who are struggling to pay for CHD care and treatment. It is expensive and it is hard, you are not alone.
I suppose I also write this piece to vent a bit of anger. Because of the cost of my basic CHD treatment, I will never have financial stability. I live everyday knowing that one major incident – like an inevitable surgery – is likely to result in bankruptcy, despite my “Cadillac insurance.” I brace myself for the day when my “practically bankrupt” becomes actually “bankrupt.”
But, I’d like to end this blog on a bit of a higher note, so I am happy to report that I am rebounding (again). That’s what us ACHD survivors do; we survive. I got a new job – and my employer health insurance (mostly) covers my CHD providers. Thanks to my employer sponsored healthcare, my deductible has decreased from $20,000 to $7,000 (a hint of sarcasm). So things are looking up, and I know now that support for CHD zipper kids and their parents is growing bigger and stronger with each day that passes.
This individual’s diagnosis is TOF. But more specifically situs inversus with levocardia, pulmonary atresia with ventricular septal defect, atrial septal defect, and malposition of the great vessels. In adulthood, they also now have anteroseptal infarct and mild LV systolic dysfunction.