Sounds Like Weird
01 October 2013
Kameron Hurley has quite the health care saga.
It’s inspired me to write up my own story.
I’d started a new job in May. Got married in June. Twice, in fact: the legal civil ceremony and a more symbolic one in Ireland.
There was time to do all the rest of the paperwork, right? Before then, I’d been on a large-deductible policy, but couldn’t add my partner because he wasn’t my husband.
Oh, and I had that policy because I had no health care through my employer. In fact, technically, I didn’t have an employer — I was a contractor for a Canadian firm that was illegally avoiding US hiring practices. They had an office in the US, but they paid everyone as though they were a contractor. What could possibly go wrong?
Fast forward to November. Yes. The same year. (He was a lot older; I sometimes joke that we didn’t have a May-December relationship, only a June-November one.)
My husband has a stroke. Given the obvious symptoms of hemiplegia and aphasia, I knew it was severe. At the time the EMTs arrive, I’m wondering about things like long-term rehab, fearing I’d have to give up my career in software development.
Instead, he was non-responsive not long after arriving at the hospital. However, as the hospital lacked more sophisticated equipment (no MRI machine, for example), they had to do EEGs over a period of 24 hours in order to declare him dead. Which meant a minimum of 24 hours in the ICU — about as expensive as it gets for a hospital stay sans surgery.
When I agreed to donate his organs, they asked if they could airlift him to the transplant hospital in order to declare him dead sooner (which would preserve transplantability of organs). Which I agreed to.
Indeed, his declaration of death was about 16 hours after the initial stroke.
Then I got the bills from all the care providers. All told, it was over $30,000. Some of that was for line items I shouldn’t have been billed for. While technically (and for very good reasons), I owed for his care up until the declaration of death, line items related to preserving his organs or prepping him for transport weren’t things I should be billed for. They did indeed have to do heart work in order to keep it pumping.
But, to me, preserving someone else’s life was the most important thing.
So it was really a shock to go over those line items, realizing I could have just said no to any additional care that’d keep his heart beating longer — and it would have cost less. But it wouldn’t have been right in my book.
I so didn’t need the line item call with the organ bank to see what should have been billed to them vs. me.
I recall writing a bunch of checks. About $13,000 or so. The bill had been whittled down. My numbers brain says it was in the neighborhood of $17,185 before my payments. A charity designed to help folks in our situation picked up the rest, and I never received another bill.
I don’t know who those lovely people were who contributed, but — thank you.
After he died, I asked for a week off work. (Yeah, that was stupid. Duh. I was in shock.)
After trying to get my act together, I went on temporary disability for three months for the simple reason that I couldn’t think. Without the ability to concentrate, I couldn’t work. I went on anti-depressants, paid for by the disability.
The tale I tell about anti-depressants is this: before starting them, I was convinced I’d never write again. Within a couple of weeks after starting them, I was writing again. I wasn’t writing well, but I was able to put together something of a plot. It took longer for my programming brain to come back (I could write about the pain, but programming needed a clearer head).
Those pills weren’t cheap, though amazingly, this was one period when the stupid prescription plan through my credit card company was worth its weight in gold. After spending as much as I had on medical for myself and my late husband, I didn’t have enough money to take the three months I needed off. The safety net protected me at a time of crisis. I’ve paid for that over and over with my tax dollars so that other people will be able to use it in their times of crisis, too.
Unfortunately, end-of-life care is horrifically expensive. It’s when hospital bills tend to be disproportionately high, and the bereaved is/are left holding only the bills.
It could have been much, much worse. It didn’t have to be that bad. From now on, it won’t be, because my late husband would now have an affordable means to get coverage.
Maybe he’d have had those headaches checked out.
Maybe they’d have found the aneurysm before it burst.
Maybe it could have been repaired.
Maybe he’d still be alive today, never having had a stroke.