Waking up half-blind

It might cost you $6,000.

Today, we return to a familiar theme of American healthcare: How random chance can cost you a fortune.

Jesse Raub is a nice Midwestern man with a steady job and “good” insurance who, thanks to fate’s fickle hand, woke up half-blind one day in Fall 2019. After waiting a few days to see an ophthalmologist, who simply told him to go to straight the emergency room, Raub ended up spending five days in hospital, getting IV steroids for optic neuritis. He said he’s permanently lost most of the sight in his right eye.

As far as waits for all specialists go, the five-day gap between Raub seeing the primary care doctor and seeing the ophthalmologist is pretty fast—though not all specialist appointments are the same, of course. And it certainly wasn’t fast enough to potentially save the sight in his right eye; perhaps it’s only in hindsight that it was clear how urgent this particular appointment was. The Los Angeles Times reported last year on how Medicaid patients in LA County often wait months to see specialists, and some have died waiting. So maybe Raub is comparatively ‘lucky’ in this regard; he only lost sight in one eye, not his life.

One area where he wasn’t so lucky: His out-of-pocket costs. Raub provided me with his explanations of benefits from his hospital stay, showing he owed around $6,000. He hit his out-of-pocket in-network maximum for the year, which was $7350 in 2019, according to the EOB. (He told me he isn’t entirely sure exactly how much he owed in the end, because he got so many different bills; it all just went on a credit card, but the EOBs shows roughly $6,000 in his responsibility.)

The single biggest charge on Raub’s explanation of benefits for the main hospital bill, totaling $29,655, was the hospital room charge. His insurance was billed $11,340 for his five day stay, with an “allowed amount” of $8731; he owed $1,566 coinsurance on that amount. During that time, he didn’t receive a lot of complicated medical care. The nurses changed his bag of IV steroids every few hours, a doctor poked their head a few times, and that was that. Eleven grand. The next biggest charge was for drugs, at $5203.50; Raub paid $800 in coinsurance there. His insurance was also billed separately for seeing the hospital doctor, a few hundred dollars each day, and at least one separate charge for seeing the neurologist.

Since we talked in December, Raub had new symptoms—something called Lhermitte's sign, a feeling of an electric current running down his legs, plus numbness and tingling in his legs and feet. It got worse and he began to feel lightheaded, so he went to the ER, who told him to follow up with his neurologist; he needed another MRI, but it would have cost more to get one there than just waiting to see the specialist. Last week, the neurologist gave him a preliminary diagnosis of multiple sclerosis (MS). There’s nothing Raub could have done to prevent this entire episode or his condition; it just happened to him, as life does. And in America, keeping that life can be damn expensive. (Raub told me the condition should be well-managed with medication.)

He’s still waiting for the latest bills, after a follow-up MRI scan in December and the MRI that showed signs of MS last week—and since his deductible resets in January, he thinks he’ll be on the hook for the full amount, twice. In a follow-up email, he told me: “I likely will have to pay $3-4k for last year’s MRI, and I’m sure I’ll hit my max out of pocket this year for $4500 and maybe just have to plan on that for every other year that I have this insurance.”

As always, our conversation has been edited and condensed.

Jesse Raub: I woke up [in] October of 2019 and I was basically just blind in my right eye. It’s pretty disorienting, because you don’t really think “hey, I’m blind in my right eye,” it’s maybe just kind of a fuzzy feeling, or like, you feel disoriented. So it took me about four or five hours to finally close my one good eye and realize—oh, wait, I can’t see. I’m pretty lucky I’ve got a good job, I’ve got run-of-the-mill solid health insurance. I went to my primary care physician the same day, they got me in quick—I couldn’t see my regular doctor but I did see the other doctor who I see occasionally there. She gave me an eye test, checked me out, said “You know what, I think you need to see an ophthalmologist.” I couldn’t get in to see the ophthalmologist that would have been in my insurance network for about four or five days, so once I did go in, the ophthalmologist looked at me and said, “Oh, you need to go to the ER right now.” 

So I went downstairs, luckily they were in the same building, and they said, “yep, optic neuritis, the only thing we can do is give you a bunch of steroid treatments, you’re going to be in the hospital getting IV steroids probably every eight hours.” And that was about it. The funny thing is the ophthalmologist wasn’t even in my network, technically, so even though it was in the same network as the doctor group and the hospital, because it’s a private independent practice, I ended up having to pay out of pocket for the ophthalmologist to look at me for 10 minutes and say, “go to the ER.”

The end result of all this is that I got home, I recovered as well as I can, I am about 80% blind in my right eye and that’s going to be permanent. The best I can describe it is if you wake up in the middle of the night in a dark room and it’s like, everything is grey and dark, I can kind of see the outline of like, the dresser, so that’s kind of what my right eye is like all the time. 

After that, basically I got told, “yep, there’s nothing you can do to make it better.” I just got a followup and the doctors are like yeah, it’s completely atrophied, that nerve is never going to come back. I was trying to figure out hey, was there any reason why this would’ve happened, or what caused it, the answer is no idea. It’s usually the first sign for multiple sclerosis for people, or an autoimmune disorder, and I have tested negative for any possible autoimmune disorder or multiple sclerosis multiple times. [Sick Note: As mentioned above, Raub has since been diagnosed with likely MS or another autoimmune disorder.] So the answer is we don’t know, it just happens. One and done, you can wake up one morning and you’re just going to be blind in your right eye.

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It’s funny to talk about now because I don’t really feel any impediment to my daily life, but every once in a while you’ll kind of rub your right eye and go, oh crap! I can’t see. And you think, oh right.

Sick Note: That’s a grim PSA.

Jesse Raub: Yeah, you might wake up blind. There’s no reason for it, there’s no way to fix it. 

One thing about insurance, potentially if I had gotten into the ophthalmologist and the ER right away, maybe the steroid treatment done earlier could have saved more of the nerve from being damaged. 

There’s really no good data that says, within two days you’re fucked, or anything like that. No doctor can really tell me for sure. But I may have retained more of my vision, or I may have even woken up that morning and the damage is done—we just don’t know.

The fun thing is, you get to see all your hospital bills roll in and you think, they won’t all total up to that will they? Well, the main hospital bill won’t, but you get billed for every single time you see the doctor in the hospital, and then you get billed for every single time the specialist comes in. So the doctor would come in, and I would get a $150 bill because the doctor had said, “yep, more steroids for five days.” And then every day the neurologist would come in and say, “yep, the doctor’s right, more steroids.” And the neurologist, because they are a private doctor who is visiting around the hospital, that bill is separate from the hospital, so that visit is its own $250 or $300 bill.

And then the hospital stay in itself, five days in the hospital is like $40,000. Out of pocket, I think it was about $6800 or so for the deductible, and then maybe an extra couple hundred dollars for the co-insurance after the deductible was met. [Sick Note: His deductible was actually $3000, but the out-of-pocket maximum took it up to $7350.] Which is something I didn’t realize— yeah there’s the deductible, and you’re like, once you hit the deductible everything is paid for, right? Well, once you hit the deductible, 80 to 90 percent of everything’s paid for, and you still have to pay for 20 percent out of pocket.

And the reason why I try and talk about this experience a lot is that I have a good insurance company, whatever that means. They’re really sweet, really helpful people. It’s a really small company based in Northern Wisconsin, every time I call them they’re so helpful to tell me exactly why they’re not going to pay for this or that. But they’re just the kindest people, they’re very sorry that they can’t do more. It’s not like I have a preexisting condition, it’s not like I got in a car accident that seems like it could be preventable—it’s just the reality of, you may wake up blind and it’s going to cost you $8000.

Sick Note: Are you still paying that off?

Jesse Raub: I think I have technically paid all of it off. The fun thing is that we have a sweet little old tiny rescue dog, his spine basically just crumbled so he had to get emergency spinal surgery. He’s fine, he doesn’t notice it. But we had a great, fun, $6000 spinal surgery for the dog. Which, you get to a point—I’m 35, I come from a Minnesotan upper middle-class family, my mom’s a teacher, my dad’s a textbook salesman. So I’m kind of living this millennial lifestyle of like, I’ve got a good job, I went to college, we make money. But, the idea that I can really be saving for a future in the way that my parents were, or the idea of really being able to have kids, it just doesn’t feel… You look at it and you think, it doesn’t really feel that attainable.

I put everything on a credit card that I had, and then immediately applied for a balance transfer to a 0% card. I just transferred that to a new card with 0% APR, and I have about $6000 left. So I think we’re just paying the dog off now. 

Sick Note: I would also note that the dog’s spinal surgery was less than just your portion of your eye thing, which, while the human body is a lot more complicated, you were just in the hospital getting an IV every day.

Jesse Raub: Exactly, I sat in a bed, a very nice nurse would come in, and then a very funny sarcastic nurse would come in too, and they would put a new IV bag on me. You’re paying for the steroids, you’re getting fed—actually decent hospital food, steroids make you starving so you’re pounding random food—but yeah, forty grand for the stay, and then my dog’s back legs aren’t working and you take him to the dog ER, and they go, “we’ll do spinal surgery, we can just do it today, we’re going to open up his entire back and fuse his spine and scrape out all of these extra…” and you go, “God, that’s serious”, and they go, we’ll keep him for an extra day or two just to make sure, and you’ll just take him home, and he’ll be fine. Six grand. 

Sick Note: The cost of you getting that IV changed every day was like seven dog spinal surgeries. 

Jesse Raub: Exactly. 

Have you been struck by a random and expensive ailment? Send me your healthcare stories: sicknotenewsletter@gmail.com.