Getting Quality Health Care: Apparently Impossible

The state of health care in the United States: ineffective and humiliating.

For the past two years, I’ve had a digestive problem. The symptoms, which are intermittent and vary in intensity based primarily on what and how much I eat, include:

  • Acid reflux, sometimes to the point of burning in the back of my throat.
  • Heartburn, sometimes quite severe.
  • Pain, soreness to touch, and hardness in the area between my lower ribs and naval.
  • Pinching feeling in my muscles just beneath my lower ribs when I lift something even moderately heavy.
  • Vomiting, usually at least six hours after the meal I’ve eaten.
  • Feeling hungry and full at the same time.

I don’t have all symptoms every day, but I can usually count on at least one of them to make me feel less healthy than I should.

caduceusTwo years ago, I went to a gastroenterologist. She came into the examining room, spoke to me briefly about my symptoms, made a few notes on an electronic clipboard device, and told me to take Pepcid AC, the over-the-counter version of Famotidine. Then she listened to my heart and took my blood pressure because she “had to.” (Her words.) That first waste of my time cost me $128 and half a day of work.

When the symptoms didn’t go away, I went to a Wickenburg general practitioner who had been recommended to me, Dr. Diane Juilliard. When I described the heartburn symptom as a pain in my chest, she immediately hooked me up with a cardiologist who just happened to share office space with her one day a week. He put me through a battery of tests with the apparent goal of proving there was something wrong with my heart. Every time a test came back negative, I’d be told that it wasn’t conclusive and I’d be sent for another one. This went on for months, costing me thousands of dollars. After the final treadmill-jogging stress test, he was satisfied that there was nothing wrong with my heart.

While I’m very pleased to know that my heart is healthy, I wasn’t pleased to waste months of my time and thousands of dollars to obtain that information. Worse yet, when my husband paid his Cobra health insurance 5 days late and we were cut off, I could not get insurance because of my alleged “heart problem.” I was without health insurance for six very scary months. The only reason they let me back into Blue Cross Blue Shield is because I signed papers saying I wouldn’t put in a heart-related claim. (Why would I? There’s nothing wrong with my heart.)

I dumped Juilliard as a general practitioner when her office refused to give me the H1N1 vaccine last year, telling me over the phone that there was “a chance of severe neurological damage.” Yes, I’d managed to find a real MD who was a vaccine fear-mongerer. I suspect that she’s also a real supporter of the drug company salesmen, since she changed my two regular meds to new prescriptions for which no generics existed, pumping my prescription costs up from $15/month to $150/month.

I found a new general practitioner in Phoenix named Robert Rosenberg. He’s a little wacky — he has a weird sense of humor — but he knows his stuff. Unfortunately, I first got hooked up with him in the throes of my insurance problems, so I wasn’t able to attack the digestive problem immediately. We’re working on it now. To that end, he sent me to Dr. Stephen Winograd, who happens to have an office in the same building. Dr. Rosenberg suspected that I had a hiatal hernia and sent me to Dr. Winograd to get “scoped.”

I called Dr. Winograd’s office three weeks ago. The earliest appointment I could get was yesterday. I asked if I had to do anything special before the procedure. I was told that I wouldn’t be getting the procedure at my appointment. It was just a consultation.

Of course. The more visits, the more payments the doctor can collect.

The day before my appointment, the doctor’s office called and left a voicemail to confirm. The voicemail told me it was very important for me to call them back at a certain number and press #6. I didn’t see any reason to do that — after all, I had an appointment and hadn’t canceled it. They’d just confirmed it. Did I need to confirm it, too? I didn’t think so, so I didn’t call back.

I arrived promptly at 3:30 (as requested) for my 4:00 appointment. They took a photocopy of my insurance card and photo ID. They then gave me a stack of five forms to fill out. The first one asked for contact and insurance information — the same stuff they’d already gotten in their photocopy. The next three were for family medical history, personal medical history, and a summary of my symptoms. The last one was a form that said they could give my medical information to basically anyone who asked for it, as long as they seemed official enough. I was supposed to sign it but I didn’t.

I handed in the paperwork. No one checked it.

At 4:00, I was taken into an examining room where a nurse took my temperature, pulse, and blood pressure. I had to ask what my temperature and blood pressure were; she didn’t volunteer this information as she wrote them down. (I ask for this information because I like to collect data points taken by professionals. My temperature generally runs a bit lower than normal — usually around 97.8 — but I was 98.2 that day. Although I have a blood pressure cuff at home which I’ll occasionally use to check the effectiveness of my blood pressure meds, I think a nurse with an arm cuff and stethoscope is a much better way to get accurate data.)

The nurse consulted with the doctor and then came back and told me he was ready to see me. She escorted me across the hall into an office where a 50ish, overweight man sat in a chair behind a desk. He didn’t look like a doctor. He didn’t look healthy. He looked like someone who needs to get out in the sun once in a while, perhaps while trying to get some exercise.

He didn’t get up or offer a hand. I sat in one of the two chairs on the other side of his desk.

He glanced at some paperwork in front of him. I don’t know if it was the forms I’d filled out. If it was, he obviously didn’t read them. He asked me for my three worst symptoms. This annoyed me. I didn’t realize I was only allowed to have three symptoms. (Maybe I watch House too often.)

I chose vomiting (never fun), acid reflux, and the pain in my gut. He asked if I were taking any medication for the acid reflux. I told him that I didn’t think taking medication was a good idea until I knew what was causing the symptoms.

He said it was either medication or surgery. (Yes, he really did say surgery at that point.) He said most people chose medication. I told him that I didn’t see how surgery could be possible without a diagnosis.

That put him off a bit. Of course he had to come up with a diagnosis. But as far as he was concerned, he already had. It appeared on my paperwork later: GERD.

I told him that Dr. Rosenberg thought I had a hiatal hernia and had sent me to be scoped. He asked me if I wanted to be scoped. I told him that’s what I’d come for. He asked me if I’d ever been scoped. I told him I hadn’t.

I told him about the pinching pain. He said that didn’t sound like it had anything to do with my digestive system. I pointed out that it started the same time as my other symptoms and had been going on for two years. He insisted it had nothing to do with anything he could help me with. He suggested that I Google it as a symptom and see that it had nothing to do with GERD. (Yes, he really suggested, during a “consultation,” that I get medical information via Google.) Then he took a step back and said that anything was possible.

I asked him how I could be vomiting food I’d eaten at least 6 hours before. Didn’t it all get through the stomach in that time? He told me I was probably not vomiting food. He said it was probably just the acid. I assured him it was food. Lots of it. Like a whole meal. With bits and pieces I could taste again on the way out. He didn’t seem to believe me.

He did not offer any explanation of what could be causing my problems. He did not use any visuals — diagrams, charts, drug company pamphlets — to show me how it all worked. Instead, he made a big show of agreeing to send me for a upper gastrointestinal endoscopy and a upper gastrointestinal series. He then made a big show of rising from his chair to “escort” me back to the examining room. There were no goodbyes. I’d obviously rocked his little world.

Back in the examining room, the nurse came back in with a much photocopied pamphlet with information about the endoscopy. She then escorted me into another office where two women sat at computers facing a wall. Behind them, on the opposite wall, were three chairs. I sat in one of these chairs while one of them women, her back to me most of the time, scheduled the test for me three weeks in the future. She handed me more paper and told me to “check out.” Like at a supermarket.

I found the front desk and handed over the paper. They took my $50 co-pay — I’m sure I’ll see a bill later, considering my deductible is $10,000/year — and handed me a sheet of paper with information about calling to schedule the other test. Evidently, it wasn’t possible for them to do it for me.

I left feeling angry and stupid.

This morning, I woke wondering whether I should go ahead with the tests. Dr. Winograd had already made his decision on what was wrong with me based on looking at me across his desk and hearing a few choice symptoms. Would he even look at the test results? Was I just going through the motions, throwing more money at an annoying health problem that no one seemed to think was serious to warrant real attention?

Was I wasting my time? Should I ignore the symptoms and simply mask them with drugs?

I recall the surgery I had back in 2006 when a lump in my abdomen had grown to the size of a 6-month fetus. I’d had the lump for years and had asked various doctors about it. They didn’t seem concerned. It was only when a routine visit to a gynecologist got another doctor’s attention. Visiting a gynecologic oncologist, seeing all the cancer patients in his waiting room visit after visit, wondering if you’ll soon be as bald and near death as they are, is a truly terrifying experience. The surgery and what came afterward wasn’t fun either. Thankfully, no cancer, but I have a scar big enough to be the mother of caesarian-born twins.

An experience like that sticks with you forever. In the back of my mind is this nagging thought: what if this is something serious? How bad does it have to get before I get proper medical attention?

Or is it “just GERD” that I can “cure” with Pepcid AC and a switch to decaf?

Interesting Links, December 8, 2010

Here are links I found interesting on December 8, 2010:

Laptopless in Florida

An iPad-only weekend.

I just got back from a trip to Jacksonville, FL. It was a business trip for my husband and I went along because my mother lives only 30 miles away. I hadn’t seen her in about a year and figured I’d tag along and spend some time with her, my stepdad, and my sister.

I was determined to pack light for this trip, so when it came time to decide whether to bring along my laptop — a 13-inch MacBook Pro — I decided to leave it home and rely solely on my iPad for access to e-mail, the Web, etc. It would be a good test of the iPad as a computing tool.

I should mention here that I’ve done this before. In May, I flew my helicopter up to Seattle by way of Lake Powell. My iPad was new back then and I decided to use that trip as an experiment. I was relatively successful and that must have been at the back of my mind as I made my decision to do this again.

As it turned out, it wasn’t a good decision. The problem is, my iPad doesn’t have 3G. I’m already paying for Internet access in three other places — at home, at our Phoenix condo, and on my BlackBerry — and I simply wasn’t interested in paying for yet another access point. On my laptop, I can take advantage of Bluetooth tethering to my BlackBerry to get online just about anywhere. (And believe me, I’ve put this to the test in some pretty remote places.) But Apple doesn’t allow Bluetooth tethering on its iPads, so anyone without a 3G iPad or access to WiFi is pretty much screwed.

Bottled WaterWe were staying at the Marriott Sawgrass Resort in Ponte Vedra, near Jacksonville, FL. This is one of those fancy resorts where you pay a bunch for your room and then pay through the nose for everything else. Hell, a bottle of Fiji water they’d considerately put in our room for our consumption had a $6 price tag on it. (Can someone please explain why we need bottled water imported from Fiji?) Even the Starbucks in the lobby was charging a full dollar more than regular prices for a latte.

And Internet access via WiFi? Well, that would cost me $13 a day.

Can someone explain why my $89/night room at a Holiday Inn Express comes with free WiFi and our $205/night room at a Marriott didn’t?

I don’t want you to get the idea that I’m cheap — despite how this sounds. I’ll admit that I do try to save money when I can. And frankly, since this was a business trip, if we’d paid the $13/day, it would have been billed to the room and Mike’s company would have paid it. So I could easily argue that it was free for me.

But it’s the principle of the thing. $13 a day! That’s obscene. No one should be paying that for Internet access.

And no, even the Starbucks didn’t have free WiFi.

Of course, without WiFi, my iPad had limited use. Sure, I could read ebooks, do crossword puzzles, and make notes in my journal, but I couldn’t check e-mail or the weather or get directions from point A to B.

On the day after we arrived, I went down to my Mom’s house and sucked Internet there. I checked e-mail and tweets and weather. I even showed them the video of the cat on the Roomba — appropriate because I’d bought my Mom a Roomba for Christmas.

Later, it was back to the hotel, without WiFi.

ReflectionsI thought about how I was neglecting my blog. (This is the first real entry in over a week.) I wished I could write and post something about my trip — the great fish dinner on the first night, one of the other wives getting her luggage lost by the airline and our subsequent shopping spree at Target, the luggage size of our companions who apparently packed for three weeks instead of three days, the great deal I got on a rental car, the surprisingly peppy ride of the Hundai Accent I wound up with. Or maybe the authentic Spanish tapas I enjoyed with my family in Saint Augustine and the huge ice cream sundaes we consumed afterwards. Or the weather, which dipped down to the 20s (F, not C) at night, with a wind that obliterated the wonderful reflections I’d photographed from our room the day we arrived and ruined what might have been a nice walk along the ocean on the last day of our stay. I couldn’t blog about any of this because (1) typing a long document on the iPad’s “keyboard” is likely to result in insanity (2) I didn’t have access to the Internet to post anything.

SeashoreWith all this in mind, it’s pretty clear to me that I should have brought along the laptop. With it, I could have used my phone to get online. I could have blogged daily. I could have kept up-to-date with tweets. I could have realized that the weather would turn sour and those wonderful reflections on the pond outside the hotel would be gone the next day, giving me no second chance to photograph them properly.

Of course, I could also argue that not having Internet access made me more social and physically active. Although I didn’t hang around the spa with the girls after my facial to “catch up,” I did take two of them shopping in my rental car. And I did treat myself to a solo shopping spree — one pair jeans, one dressy jacket, one pair shoes, three pairs socks, one long-sleeved tee shirt — that required a bunch of walking and a nice drive along winding, tree-shaded Florida roads. These are things I might not have done if I’d had a WiFi connection to hold my attention.

But what’s surprising is how much I’ve grown to depend on the Internet for information and entertainment. For example, while at my Mom’s house, I showed my stepdad how to use Snopes.com to check the accuracy of the information in e-mails he receives. (No, his cell phone probably can’t do all those things.) I showed my family pictures of the hotel we were staying at. We looked up menus for the tapas restaurant. And yes: we watched at least five videos of cats with Roombas.

Internet access has become such an important part of my life that when it’s taken away, I feel handicapped.

And I can’t imagine that being a good thing.

Interesting Links, December 3, 2010

Here are links I found interesting on December 3, 2010:

  • Steve Martin Isn’t Predictable Enough!: This Is Why We Can’t Have Nice Things – "This is what makes the world boring, quite frankly: the absolute refusal to risk that anything might be disappointing, and the accompanying conviction that if you are disappointed, you've been wronged. It's the entitlement of the incurious, and it does nothing good for anyone."
  • 92nd Street Y goes "American Idol" on Steve Martin – "After a talk on Manhattan's Upper East Side between an art critic and the author of a book about the art world, a sold-out audience of 900 has been granted a refund because the conversation focused too much on art." Read more on Salon.com.