Tuesday, February 02, 2010

Tales from the health care battlefront -- Part I

As the focus dies down from the legislative fight over health care reform, I felt the irresistible urge to share some stories, mostly my own but some belonging to others, of what it's really like out there to be sick and in the hands of the dysfunctional health care system in this country. Surprisingly, I don't have a lot of negative health insurance stories, which isn't to imply that there aren't any or they aren't deserving of the lambasting they get, just that in my experiences and others I've heard, there are plenty of villains to go around and who never get talked about in terms of needing to be reformed: hospitals, doctors, bureaucratic nonsense, and, above and foremost, people who handle the billing for them.

I'll share some quick anecdotes of others before, for the first time, I go into excruciating detail of my health plight of which I've often referred.

I'm still being treated for a bedsore that I acquired following surgery in May 2008. Two health care workers (they alternate) come to my home three times a week to change the WoundVac which we began using in October and has been showing impressive results.

One of the two women would like to be able to retire in the near future, but given the current status of the health care bills and the lengthy wait for its elements to take effect, she fears she won't be able to get insurance (Yes, an employee for a hospital's home health unit doesn't get health coverage in retirement) because her diabetes will be a preexisting condition. As the Senate version stands, insurers will still be able to charge her twice as much as someone without diabetes.

The other woman's story is sadder and more tragic. Her son has muscular dystrophy. They depend on the Medicare Advantage program, which requires that the patient have no assets. People who get it have to go through legal hoops to hide money or spend it away to qualify. Yes, you are only worth helping if you are penniless, but that is not her and her son's problem. He lives alone, but the program has already been cut to 15 hours of nursing visits a week. The whole impetus of the program was to keep patients out of nursing homes, and those costs and horror stories need not be recounted here. On top of that, he is prescribed opium because of a problem with chronic diarrhea, however Medicare recently arbitrarily decided it wouldn't cover opium anymore. This could lead to serious problems for someone who does not have someone there constantly. She is beside herself and has written to one of our senators, Jim Inhofe, for help. Good luck. Our other senator is Tom Coburn and our representative is Mary Fallin, who is too preoccupied with her run for governor to help constituents. Talk about taxation without representation. His mother fears she'll only get attention when she has to run his obituary.

I, for instance, could use help since I'm dependent on my aging parents as caregivers, but to qualify for most programs, you again have to be broke. We are not rich, but they count all our assets since we live in the same home. We aren't rich enough to pay for what we need and we aren't poor enough to get the help we need. The idea of hiring a lawyer to figure out how to hide cash as if we were criminals insults me. I do pay for a caregiver to help with things for 8 hours a day, 5 days a week to lessen some of the load off my dad, but by state law they aren't allowed to do medical things, so my dad still has to dress my stomach wound and irrigate my catheter if needed and change my pain path. There also are strange restrictions: the caregiver can help with my bowel movements, but he's not allowed to trim my toenails. This is how we treat our sick.

Another nurse I've come into contact with during home health care shared a tale of her son who was hospitalized in another state after a severe accident and called his mom, wanting to know what he needed to do, since he was still in college and on her insurance at the time. She said first and foremost to make sure that the doctors and nurses knew that he had a severe allergy to sulfa and not to give him anything that contained it and she'd be on her way. Once she arrived, she was horrified to find her son's entire arm swollen as well as the side of his face to where he could barely speak. The "no sulfa" band was clearly on his arm, but mom was clearly livid. She demanded to see the doctor who ordered the IV he was being given, which, of course, contained sulfa. The doctor, as most doctors do when challenged, took an arrogant tone and assumed that a patient's mother must be an idiot, not realizing she was a nurse, and when she asked if he didn't notice the notes that said her son was allergic to sulfa started to try to act like he was smarter with a "With chemisty..." before he could finish his pompous excuse, she stopped him with, "OK, let's start with chemistry. That's what I got my first degree in." There are good doctors, but they hate being challenged ever. That's why I've fired many in my lifetime. They need to be reminded often that they are the employee and the patient is the employer. It's good to give them a swift kick in the ego.

When I was first admitted to the hospital in May 2008, I was admitted by a very arrogant hospitalist, who came in once a day to check my heartbeat and lungs, ask me how I was doing and pretend he was listening. He was so obviously not paying attention, I toyed with the idea of saying ridiculous things like, "I'm OK, but last night a penguin came running across the floor of the room and then ran out again," just to see if he even noticed. One day, he pissed me off about something and he got into my face -- and you only do that once. The next year, when I had to be admitted to the hospital again, he came into the ER room where I was and introduced himself -- of course, he didn't remember me -- and said he'd be admitting me. "No, you aren't," I replied. "You admitted me last year and you were an arrogant asshole. Find someone else." I can't tell you how much I enjoyed the sight of his chin hitting the ER's linoleum.

This has already grown very long, so I think I'll save the rest of my tale for part II.


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  • For those people who oppose health reform, it is usually the case that they are sitting on the other side of the fence and have not experienced the significant difficulties associated with being ill.

    The lack of empathy of these individuals for those who are suffering is unfortunate and points to a significant lack of awareness because accusations are often made about freeloaders. It is not as if people choose to be ill or have much option to not seek treatment when they are ill.

    By Anonymous Wellescent Health, at 4:25 PM  

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