Health Insurance – My Story
What Happened to J.B.
J.B. abruptly launched from the earth. She was not sure if an acorn, a rock, or a tip of metal lifted her into the air. It was difficult to know what precisely rolled on the surface of the parking lot so late that night, walking out from the small editorial office. As she flew she heard the loud break in her bones, the sharp snap. Unused to flying she tried to yaw and roll in the opposite direction. Yet she possessed no control of her actions. She heard a brittle crack.
She looked over. The bones of her right leg were disconnected from her foot. Quickly she felt the pain.
Almost as quickly J.B. recognized she had no health insurance.
It was the night of October 21st, 2010. Her editor found on the ground, and got her to the car. The regional hospital was not far.
X-rays were taken of her right foot. There was a comminuted fracture of her right tibia and fibula; the area around her ankle was a mess. An orthopedist was summoned. Surgery would be needed quickly, but he would not know for sure what needed to be done until he got “in there”. He would probably need to put in a plate, as well as other hardware.
He left. The ER doctor told her to go home, and come back the next morning ready for surgery.
She could not believe it. Her pain was excruciating. She couldn’t go home. The doctor insisted.
So did her editor. He pointed that he owned and ran a local newspaper. There was a brief “OMG” declaration followed by other discussions.
She was allowed to stay. But then J.B. pointed out that her left foot really hurt, too. Something had happened there, too.
More x-rays were done. Surgery would be required on her smashed left 5th metatarsal.
The orthopedist returned. Soon she was in the O.R. The procedures lasted from about 8:30 to noon. When she woke J.B. was in a haze. She learned there were two new rods in her right leg, and a piece of new metal in her left little toe. “Some kind of sinewy substance” had been sutured inside around her ankle.
The rods were insufficient ballast for all the damage. A wide metal plate had been placed over the top surface of her right foot.
The next five days were mainly uneventful. She stayed in hospital, slept, recovered. Then she went home.
There was a new hospital bill for $30,000 which she could not possibly pay. The orthopedist had heavily discounted his fee, but she did not have any chance of paying him either. She was told to stay in bed.
How could she work? If she didn’t work, she wouldn’t eat.
J.B. stayed on the mattress for the next two months. Her bed became her work station. There was placed the computer, the telephone, and folders. She could not move much, so a commode was rented and put next to the bed.
Her 76 year old mother, who she was supposed to care for, became one care giver. So did her kids.
Newspaper clients expecting each week to see her genial face learned they would now communicate by email and phone. Part of her job had been drumming up new business for the newspaper. That did not work so well.
About 12 days later the external staples were pulled off. She felt a bit better.
And then she didn’t.
As she healed in her bed, some of the internal sutures decided on their own to see the light of day. J.B. called them “sandspurs,” the tiny, crinkled balls of spiky thorn that attach themselves to sneakers, shoes, and pants legs. The banked sutures hurt like hell as they came out from the skin, forming tiny balls.
The orthopedist pulled out the first two “sandspurs.” He could not quite get at the third.
She was given antibiotics – sulfas – for 60 days. Things got better again.
But the right foot continued to hurt.
J.B. started working back in the office after those two months, but the leg never felt right. The pain came and went, but never entirely left. Sometimes the foot would become really hot. She had not paid the orthopedist in full, and he was loth to see her without further infusions of long green.
So every month to two months she came to the ER. Each time she told them how much pain she was in. She would be observed but rarely x-rayed. Each time she received antibiotics and left to go home.
Then on June 11, 2011, she began to think she might lose her leg.
This time the infection shot past the ankle and went all the way up her calf. The ER doctor muttered that maybe “the plate should be taken out.”
Her orthopedist x-rayed her at 9 month. He happily reported her joints had rebuilt well and reknitted themselves. Her bones had regenerated quickly.
But there was still the matter of the plate over her right ankle and foot. J.B. recalled the orthopedist telling her the plate might last her entire lifetime, and “some people had no trouble with it.” Yet it was quite customary to take it out at around 18 months.
If things were not infected, that is.
But there was no money to take out the plate. The orthopedist referred her to another hospital where he had privileges. Perhaps she could strike a deal with the other institution, she was told. For perhaps merely $2000 “someone else could take care of you.”
When she spoke to administrators at that hospital, they explained her doctor was legally required to continue following her and providing her care. They were not going to help.
And she could not pay them. The orthopedist explained he could take a further discounted fee, paid over five months, and he would take out the plate. Yet there was no money for him, and certainly not for the anesthesiologist and hospital fees required to pull that plate.
This new infection had left her right leg “hard and hot” almost up to the knee. She was told to get 10 days bed rest. She dutifully took the new antibiotics.
The leg slowly got better. Walking remained painful. Her colleagues kept telling her she needed to get the plate out.
J.B. did not see a way she could do that.
It was almost a year. J.B. hobbled along, did her work, got used to the pain.
Then the area over her ankle turned black.
The area was about the size of three silver dollars, but kept growing. It hurt like hell, but not like the last infection. This felt deeper. Underneath the skin it felt “mushy” and very tender.
There was still no money to operate and pull out the plate.
Another round of antibiotics, another round of partial improvement. Then things go worse again.
The New Year
One way or another J.B. determined she was going to get that plate out. She appealed to the regional hospital patient advocate. The advocate would “intercede” with her orthopedist.
The patient advocate phoned back. The orthopedist would see her if she paid $600 or $800 of what she owed. J.B. scrounged up the money.
X-rays were taken. The infection looked bad. The orthopedist told her he would operate on February 15th, but that to heal J.B. would have to stop smoking.
She hasn’t smoked since.
The operation that day took over 3 hours. After the plate was removed, “new holes” were drilled into the bone, which had been left a mess. There was infection all over the place.
She had osteomyelitis – infection of the bone.
A PICC line was placed in her chest so intravenous antibiotics could be administered day after day.
Every day. For six weeks. To start.
J.B. was not too happy with her first infectious disease doctor. The young woman told her “you may lose your leg, but we’ll do what we can to save it.”
But that first ID doctor did suggest a useful change – from vancomycin to daptomycin.
Vancomycin, commonly used on severely resistant infections like MRSA, needs to be given twice a day. The infusions were sometimes difficult. There were days it took 30 minutes for the infusion to get done. On other days it took three hours.
It was hard to work at the office when you’re going to the infusion center twice a day.
Her first doctor recommended she switch from vancomycin to daptomycin. Both were very expensive, but daptomycin could be given once a day. A bunch of paperwork she filled out made it possible to petition the drug company to give her the drug free of charge.
They came through. She has not seen a bill yet.
The second ID specialist was more hopeful. He explained that bone infections were hard to tame but that they would watch her over time, in quarters of a year. Every three months they would check to see if she were progressing – or not.
On February 15h J.B. was sure she would lose her leg. Now she is more hopeful.
The Way We Live Now
J.B. is working. She can walk. Her doctors tell her she should walk – five hours a day. The swelling in her leg may continue forever. She is buying compression stockings. The pain is manageable, but she is concerned for her PICC line, whether it will continue to work.
The financial hole is bigger. With the second operation her hospital bills are over $60,000. She owes a lot of people a lot of money.
She’d love to repay it. But with her present salary that will take a long, long time.
The cost to the medical care system – and the society – stands as an entirely separate item.
Would J.B. have been treated differently if she had had health insurance?
Without a doubt. The operation she first received, and the care after, were probably very much what might have happened if she had carried even excellent insurance coverage. Yet her follow-up after would probably not have occurred in ERs, where she was sent home without further studies and with new batches of antibiotics – and no new cultures. Infection might have been controlled better than it was, though how well is debatable.
With full insurance she would have her plate removed far earlier – as both ER doctors and work colleagues had been telling her for months and months.
But it’s hard to get an operation when you can’t pay for it.
Yet the payments in the end have been, and will be, greater.
The second operation revealed osteomyelitis – bone infection. Antibiotic treatment for osteo is notoriously long and expensive.
And it may not work. Even if it does, J.B. has to wonder how much of her foot and leg might eventually prove unviable. She doesn’t want to lose any limbs – or parts of them.
And a woman without a foot costs society in many, many ways. It costs more when you recognize that the problem might never had occurred – if J.B. had had effective health insurance.
Just as she had most of her life. Until she lost her last corporate job.
Her saga is unfortunately a common one. People without insurance try to get what care they can. Hospitals first do what they should – but often refuse to pick up the ball once the “emergency” is over. Many a health professional told her she needed to have the plate removed from her foot, but few gave her a way to accomplish it. Doctors discounted care severely, or sometimes worked for free – but could not negotiate that further hospital fees be waived.
And J.B. got sicker.
She still has osteomyelitis. A similar infection lies in the bones of American health care.
There are 50 million people without health insurance. A further 50 million are on Medicaid. Medicaid does not pay for much care, including preventive care, though it is certainly better than nothing.
And nothing is what many present Medicaid beneficiaries will soon have if proposed changes in Federal and state laws take place.
Then there are tens of millions who pay high amounts for health care, but still have deductibles that are half or more of their yearly earnings.
Everyone should do what they can to become and stay healthy – through their own actions. A great part of health – personal well-being – lies under personal control. Lifestyle radically alters health.
Yet even if she had not been a smoker, J.B. probably would have broken her foot, ankle, and toe the night of October 31, 2010.
Any of us can become unlucky. People get sick. The purpose of insurance is to insure. The fortunate pay into a general pool so the unfortunate can be treated and protected.
That’s supposed to be how it works.
But for many, nothing works right now.
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