There is no Doctor for a Broken Heart

There is no Doctor for a Broken Heart

If you follow me on social media (Instagram and Facebook especially, although also MeWe and Twitter), you’ll know we’re having an insanely expensive January, in terms of medical costs. Honestly, all of our Januaries are expensive, our health insurance deductible resets, and we start from scratch. Usually, we hit our $5K deductible in February. This year, it will be on January 15th.

Today the expensive doctor appointments have to do with me entirely, getting a skin biopsy (can’t postpone that) and meeting with my surgeon about my upcoming surgery (also can’t postpone that), but it was the conversation with a doctor yesterday that has me riled up.

Yesterday we took all three kids to a pediatric cardiologist. This is a pretty difficult specialty to pin down for an appointment, as believe it or not, the country isn’t flooded with pediatric cardiology specialists. We went to see him because in November my father found out he’s a carrier for the gene that caused his heart condition (more on his likely open-heart surgery another time), and that genetic test service offered free testing to a certain range of his blood relatives within three months. I got my genetic test, and came back positive as well. Considering my long history of heart problems, I was scheduled for the soonest possible cardiac MRI (that’s tomorrow, BTW), and called my kids’ pediatrician to figure out what to do for them. As I’m a carrier, it gives them a 50% chance of carrying the gene, as well, and when it comes to potentially fatal (though easily monitored and treated) heart conditions, the thing is you have to KNOW.

So yesterday I attended six doctor’s appointments. One for Soph, two for Deb, two for Rivka, and one for me. And the pediatric cardiologist decided not to get the children their genetic testing, even though we COULD get it for free.

“Pre-existing conditions are covered, now,” he said, meaningfully.

“But the ACA is headed to the Supreme Court,” I said, and he nodded.

“It’s better to know, but if you know, and that’s a preexisting condition…”

I nodded back.

I did not get my children the genetic testing they should have had, because though it is safer for us to know, it is safer for us for our insurance company NOT to know.

Think about that for a minute. Think about sitting in a doctor’s office, having attempted to calm your children after uncomfortable echocardiograms and EKGs, after learning that one of your children has a hole in her heart that had never been diagnosed, knowing that you have little time to ask questions because another doctor across town is waiting for you, and having the doctor advise you to wait a few years and scan their hearts again because it is SAFER if your insurance company doesn’t know whether or not they have a gene that could one day cause their hearts to fail.

Imagine telling yourself you already have a rapport with your insurance company, as you have managed to finagle services and testing and coverage for your terminally ill husband in a matter of days when they should have taken weeks, or months. Imagine telling yourself you have fabulous insurance, and your children are covered, but knowing that at some point in the very near future the protections that let his insurance do these things for you might vanish, that your husband might not survive, and the insurance you have through his employer might then vanish, and then what?

And then imagine going the next day to your annual skin check and having another cancerous mole sliced off, then driving off to see your surgeon, and getting ready for your dawn MRI the next day, knowing that less than a week later you’ll be in a different hospital, seeing a different set of specialists, scrolling through your social media while your husband gets a chemotherapy infusion that, without coverage, is over $9K every three weeks.

And then imagine seeing the neverending news of a pointless war started by an impeached maniac on a golf course trying to distract us from his impeachment, which will distract us from the 5th circuit court ruling the ACA illegal, and guaranteeing that it will head to the Supreme Court, and Justice Hold-Her-Down will get to decide whether or not this is the last year where it’s only our January that drains every damn resource we have.

I don’t have it in me to be cheerful right now. I don’t have it in me to be lighthearted and optimistic. I’m pretty sure all five of us are going to be fine, but it’s because we HAVE the insurance, and knowing exactly how much we need it… well…

If you could, do me a favor. Call all your elected representatives. Beg them to protect the ACA. Donate to candidates who want to socialize our healthcare system. The rest of the world has socialized healthcare, and they think the idea of leaving sick people to die because of the inflated cost of medicine is barbaric. The rest of the world is right.

If we can afford to bomb airports in Iran, we can afford to make is safe to know whether my kids hearts are okay. And until we do, my heart is definitely not.

 


 

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Read about how my history with skin cancer effects our family here: Speaking for the Freedom to Opt Out of Fertility

Read my most recent post here: Our Community is Our Miracle

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