I've been reluctant to write about my story online. But when I think about how lucky I am to be alive, and how lack of insurance almost killed me, I think - well, if that could happen to me, it could happen to anyone.
So this is my story.
Two years ago, I was preparing for a research trip to India. Suddenly I got a pain just above my knee - it was a little persistent and there was some swelling, but I didn't have health insurance and I thought, okay, if I ignore this it'll go away. I'd had knee trouble growing up so I thought it was no big deal.
Three months later, while walking in a mall with a friend, I suddenly felt lightheaded, dizzy, my heart was racing, I couldn't catch my breath. I calmly said to my friend as I sat down on a bench, "I feel like I am having a panic attack." I was sweating and my skin was suddenly clammy. Then I said, in all seriousness, "I know this sounds strange, but I feel like I'm dying." She held my hand while I breathed through it, and asked me if I wanted to go to the hospital. I said no.
It subsided enough for us to go to the movie we were planning on seeing, so we walked there slowly and sat and watched the film. My heart broke out into that racing a couple of times during the film, and it was hard to catch my breath. I drove home, but it was a bit worrying - I had to pull over once because I couldn't catch my breath. Walking up the stairs to my house was almost impossible - I almost had to crawl up the last few steps, because I couldn't breathe and my heart was racing so much. I collapsed in a chair and fell asleep in it for the night.
But I didn't have health insurance, and I was unemployed (and had worked for an employer that was small enough it didn't have to participate in COBRA), so I didn't go to the hospital. When I lost my job, I applied for health insurance, but because I was (like many Americans) overweight, I was denied coverage, despite having healthy cholesterol, no sign of diabetes, and being of generally good health.
A couple days after the incident at the mall, I was still having trouble breathing, but it wasn't so bad. Then my leg swelled up like a balloon. It was so swollen that it was excruciatingly painful to walk on. I took lots of ibuprofen and kept it elevated, which seemed to reduce the swelling a lot. After a week or so, things improved, but my leg would swell up quite easily.
Two days before I was scheduled to leave for my research trip, my husband said to me, "I really wish you'd get your leg checked out by a doctor before you leave." That night, a friend emailed me from India, out of the blue, just simply saying, "please go to the doctor." So, I sucked it up that I'd have to pay $150 for the urgent care visit, and went. Later I found out that friend had had a dream about me, that I had a blood clot in my leg, and if I got on the plane to come to India, I'd be dead before I arrived. Little did either of us know how prescient that dream was.
I talked to the doctor and she listened very intently to my whole story. She asked me why I hadn't sought medical help earlier, and I told her it was because I was uninsured and hoped it would just go away. Then she said, "I want you to turn around, get into your car, and go to the emergency room. Right now." She told me I was not getting onto any airplane, and argued with me very compassionately that she wanted me to go to the hospital, because she nearly lost a patient who didn't take her advice in a similar case. She gave me the name of a hospital that was supposed to be for low income people, and sent me there. She also waived the cost of my visit (or paid it herself, I'll never know) so that cost would be less of an impediment.
The emergency room experience was nightmarish. We waited for countless hours, during which there was a shooting at the emergency room, and the hospital went on lockdown. They finally admitted me, but my husband was not allowed to join me because of the shooting. The nurses took a liking to me, because I was one of the few patients who wasn't mentally ill or drug addicted. The doctors confirmed what the urgent care doctor feared - I had multiple clots in my left leg, including a deep vein thrombosis that had been throwing clots into my lungs, causing multiple pulmonary embolisms (which was what I had experienced in July). The doctors were all rather shocked that I was still alive, and said I was more than lucky to be there - it was more or less a miracle. If I'd gotten on that plane, I'd be dead now.
They admitted me to the hospital, where I stayed for one night, pumped up with blood thinners. It was a bed in a tiny shared room with four other women and one poorly maintained bathroom. The nurses were really wonderful, for the most part, though it was incredibly difficult to get discharged even after the doctors gave their consent. I kept asking how much my treatment was going to cost, and nobody would or could tell me. I'd ask how much a doctor's visit was going to cost, and no one would tell me. This despite a California state law mandating that everyone has a right to know how much their doctors' visits and treatment is going to cost!
We finally got a bill - for over $10,000. A few hours in the ER, one night in the hospital (one night total), minimal care (two injections daily, one ER ultrasound of my leg, one hospital ultrasound of my leg, two visits from docs in the ER, two visits from the docs in the hospital), and it cost so much? The bed space in the hospital - without any additional services - was billed at $5000 per night.
From there it was a nightmare trying to find out what things cost, how to get our bill reduced, etc. If we weren't basically homeless and destitute (thank goodness we aren't) then the whole thing was a tangly web of misinformation and hoop jumping.
After months of stressful back and forth, being told one thing and the billing department doing another, the hospital finally reduced our bill by 50%. They made it clear they were doing this as a gesture and nothing more. We had fortunately documented all of our interactions, and our feeling was that they were afraid we might bring a lawsuit against them. But still, we didn't have the money. We had some money in my husband's HSA, I had about $800 left in my savings from being unemployed so long, and we were facing not being able to pay the bulk of the bill.
Some friends and my husband urged me to talk about my story online. So I did. And it went a bit viral. Suddenly, people were sending money to pay the hospital bill and my other medical bills from treatment. It started with friends, and then extended to people I didn't know. Without the kindness of these friends and strangers, I don't know what we would have done.
Just after this whole episode ended, my husband's medical insurance through work opened up for enrollment. We hadn't done it before because the cost was exorbitant for us, extra money we didn't have. But we figured we had to try and make it work somehow. I'm a grad student and my student loans have helped pay the difference. My new doctor helped me a lot, discovered the genetic condition underlying the clots, and has me on a course of treatment that has enabled me to do my fieldwork, finally.
Those few months were some of the worst and most hellish of my life. Not only was I staring death in the face, but I was simultaneously having to wrestle with a bureaucratic medical establishment that, with the exception of some of the actual providers that gave me treatment, seemed to care less about me as a patient and a human being. Knowing what i know now, I wouldn't have gone to that hospital, I would have gone to another local hospital that clearly states its fees and offers a 50% discount to the uninsured, regardless of income.
Even so, medical expenses are too high. My pre-existing condition means I'm now uninsurable for life, but people like Mitt Romney think I should be stuck this way. It's privilege talking - somebody who hasn't had to deal with being poor and uninsured while facing a life-threatening illness.
And for me, my condition was life-threatening, but the treatment was fairly swift and sure. After a few months, I was running on a treadmill and well on my way to being the healthiest I've been in years. And at the end of the day, $10,000 is a lot of money, but it's nothing compared to the expenses that friends have faced in similar situations. One friend was diagnosed with breast cancer just as she lost her health insurance, and it sent her into bankruptcy, as her treatment went into the millions. Some hospitals (including the one I went to) won't give treatment unless you demonstrate an ability to pay, even though they often won't tell you ahead of time how much that treatment will cost, so you can compare costs.
This is why we need the Affordable Care Act (divisively nicknamed 'Obamacare'). People like me, like my friends, like you, too. Knowing that in a couple years I'll be able to get health insurance even if my husband loses his job is a big deal.
And the next step is hemming in costs. Here in India, I had to get an x-ray, and it cost a whopping $9. My blood tests (required every couple of weeks) cost $5. My medication is a fraction of the cost. All of it is equitable or better quality medication and care compared to what I've gotten in the U.S. In America, with insurance, I have to pay $50 for an x-ray, and $13 for my blood tests. Without insurance, that x-ray would cost me upwards of $300 and the blood tests about $50. I can't afford to have the clot in my leg checked again because the ultrasound (with insurance) costs nearly $300.
This is all so crazy! But everyone just seems focused on making more money, and not on getting a handle on why everything is spiraling out of control. When profits come ahead of people, it's always a problem, but it's especially a problem when it comes to medicine and health care.
I am one of those people who thinks the ACA is a good start, but is not nearly enough. It's a first step in what needs to be a long process towards a broad public health system that will help people instead of penalizing them for being out of work (but too financially stable to be homeless).
Anyway, that's my story. It's not an uncommon one. Someday, I hope those Republicans who claim to be Christians will be a little more Christ-like and realize that helping the poor - not the mega-rich, who can already more than help themselves - is what Jesus actually talked about.
