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Health and the Internet: A Special Report

Jessica Mulligan

Wednesday, October 26, 2005

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Jessica Mulligan sends out a gamer newsletter [jessica@gamebytes.com ] and in a recent issue included a story about medical problems and why people are unhappy with medical services, and can too much knowledge cause problems. I thought it important and asked her to write it up for the Chaos Manor Page. Here it is. Think about this; it can affect your life.

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Who is the Quack Here?

Or,

How I Offended A Wizard

By Jessica Mulligan

May 21, 1999

On Tuesday, April 27, I awoke to two disturbing things; skin completely yellow over 100% of my body, and abdominal pains so acute as to cause nausea and vomiting.

I had been feeling the abdominal pains in the right upper quadrant off and on for several days. The pains would always subside in one or two hours and, with my history of stomach gas associated with a duodenal ulcer, I just figured it was time to stop eating Thai food and go on a bland diet for a while.

Now, with the obviously acute jaundice, I knew there was a deeper problem and it was time to go to the emergency room. I feared what I thought was the worst: infectious Hepatitis. Before jumping in the car and heading for Los Angeles County General/USC Medical Center, however, I jumped on the Internet first to do some research on the care and treatment of Hepatitis. As it turns out, this research was eventually the linchpin of my bad experience and a disturbing precursor, I believe, of things to come in the medical world.

Using Copernic 98 ( http://www.copernic.com   ), I ran a search on my symptoms (see the partial list of links I investigated below). As it turns out, professional medical information is easy to locate on the Internet; there are several dozen sites that provide extensive databases of symptoms and common medical procedures. Most are provided by existing and reputable medical organizations, though some are provided by physicians on their personal or company Web sites. I was pleased and surprised at the quality and quantity of medical information available.

To my surprise, two major illnesses consistently popped up in the search results, Hepatitis and Cholecystitis (gall stones). The symptoms of the two illnesses are very similar overall, but with two major differences:

  • Hepatitis pain is associated with the liver and generally occurs more towards the upper back of the right quadrant, while gall stone pain is centered in the gall bladder at the front center of the right quadrant, and;
  • Hepatitis victims usually sport a fever and/or chills, which is not generally associated with gall stones.

After spending thirty minutes cross-checking the symptoms on several Web site, I came to the conclusion that my problem was as likely or more likely to be gall stones as Hepatitis. Armed with this information, I drove to the LA County General ER.

After waiting for nearly three hours in the ER (no complaint, I was maintaining pretty well and others had more immediate needs), I finally had my vital signs taken and was sent to another waiting room, one designated for ambulatory ER patients. After a short time, I was escorted into the back and put into a physician visitation room where, about 15 minutes later, a young doctor finally saw me.

Things went bad almost immediately. This is where I made my first mistake. Here's how our short conversation went, as best I remember it:

Doctor: So, how are you today? What brought you in?

Me: Well, as you can see, I have jaundice, I'm yellow all over.

Doctor: (smiling) Indeed.

Me: I'm also having pains off and on right here (points to gall bladder area, located just below and slightly to the left of the right breast). It was so bad this morning, I vomited.

Doctor: Have you been experiencing nausea?

Me: Yes, sir, all day yesterday, although it wasn't heavy.

Doctor: (Writing on chart) I see.

Me: At first I thought it was Hepatitis, because of the jaundice, but now I suspect it may more likely be gall stones.

Doctor: (cocking one eyebrow at me warily) Oh?

Me: Yes, I did some research on the Internet before I came over, and I have all the symptoms of gall stones, but only some of those of Hepatitis. You see…

Doctor: (Interrupting): No, it is Hepatitis A.

Me: Well, I don’t have a fever or chills, and the pain is here, not back here in the liver…

Doctor: (Abruptly and dismissively): It is Hepatitis A. We'll draw blood to confirm it is A, not Hepatitis B or C.

Me: Well, could we just do a quick ultrasound, to rule out gall stones?

Doctor: It isn't necessary. You have Hepatitis A, my friend. Please wait out here until the nurse calls you to draw blood.

At this point, I made my second mistake. I recognized at the time that, when I mentioned the Internet, this doctor had immediately shut down on my opinion. It was obvious to me, from his demeanor and body language, that he was either threatened or angered by my knowledge of my own condition. What I should have done is insisted on an ultrasound and, if the doctor continued to resist, ask for a second opinion or to see the ER manager and kept at it until the ultrasound was done.

Instead, I kept my mouth shut and did what I was told. I'm no doctor, after all; this guy was the pro. I didn't feel right about it, but I did it anyway. Like a peasant when confronted by a wizard, I didn't question the nature of the magic, I merely bowed to its power. If I hadn't, I might have saved myself four days of pain and a very intrusive surgical procedure.

After two hours, the doctor got the initial results back… but not the results of the Hepatitis test, which would take two more days. As my white blood cell count was normal, he sent me home with a follow-up appointment eight days hence. This was inexcusable; if I had the highly infectious Hepatitis B strain, he was sending me out to infect others. According to what another doctor at the same hospital told me days later, I should have been admitted and isolated until the blood tests were back. This same doctor also told me that the first doctor had come close to breaking California law concerning infectious diseases, if he had not actually broken it.

Four days later, on Friday, April 30, at about 10pm, I was an even deeper shade of yellow and the pain was back so severely that I could barely stand. I had to call a taxi to get to the hospital.

The experience this time was dramatically different. On being triaged and admitted, the ER doctor listened to my symptoms, then pulled a portable ultrasound into the room and spent five minutes checking me out. His first comment was, "Your gall bladder is filled up with gall stones. I suspected as much when I first saw you." His second comment was, "I can't believe they sent you home on Tuesday. Now it looks like you have pancreatitis, too (a gall stone lodged in a pancreatic duct)." I told this doctor what I had told the first doctor on Tuesday, and he just stared at me. I don't know if he was shocked that the first doctor didn't at least do an ultrasound, or at me for my temerity in attempting to diagnose myself.

The upshot: I was admitted to the hospital, kept for six days while the inflammation of the gall bladder and pancreas was dealt with, and then my gall bladder and some stones lodged in the common bile duct were removed. And because my gall bladder had perforated, I couldn't have the laproscopic procedure, which leaves three very small scars; I now have a 6" scar on my abdomen and have another four weeks to wait before I can lift anything heavier than ten pounds. With the laproscopic procedure, the recovery time is days, not weeks.

No one would offer an opinion on whether the gall bladder was perforated before or after my Tuesday visit.

What are my conclusions about this?

First, it is obvious to me that the first physician I saw was angered or threatened, or both, by my ability to research and form an opinion on my medical condition via the Internet. As a long time computer and online services user, going back to 1984, I find this ability a natural outgrowth of both the information revolution and the digital means to deliver that information in a timely manner. However, it is obvious that some professions are not reacting well to the changes in how we receive and use information. I am not mistaken in my impression; that doctor immediately moved to shut me down when I mentioned the Internet and doing my own research.

I'm no doctor, but I can read a list of symptoms and make an uneducated guess as well as the next person. What I find surprising is that the doctor was threatened enough by my homegrown Internet analysis to shut me down so thoroughly and quickly. I broke a cardinal rule on dealing with "wizards" of all stripes; never challenge their mystical authority, lest you pay a terrible price.

Second, I expect we'll see more of this kind of incident in a broad range of professions, wherein current "wizards" try to maintain their "knowledge monopolies" by fiat. For example, in Texas recently, a US District judge ruled that using do-it-yourself legal software to file wills or to cheaply create divorce documents amounted to practicing law without a license, and ordered the publisher, NoLo Press, to pull it from the shelves. The plaintiffs were lawyers, who seem offended that a $30 piece of software can do what they charge hundreds or thousands of dollars to do. (See http://www.freedomforum.org/press/1999/2/2selfhelp.asp and http://www.wisctv.com/cyberlink/stories/cyberlink-990202-223433.html for articles relating to the Texas case.)

Third, I think that, as a society, we're going to see some nasty legal conflicts because of it. The Texas case mentioned above is only the first round for the legal profession. I would expect that the AMA, an organization not noted for promoting anything that doesn't put money in doctors' pockets, to begin railing against "the dangers" of freely available medical information on the Internet. The AMA tried to shut down chiropractors in the 1960s and 1970s because they were taking business away from MDs and surgeons. The Internet, if it continues to be a wide-open forum and data transmission medium, is an even greater threat to their status quo. Legal action "to protect our citizens from quacks and charlatans" is not out of the question.

The same applies to a wide range of wizardry, including lawyers, tax accountants, you name it. Before online services and then the Internet began making such cloistered data available to anyone with a computer and a modem, these professions were high-priced sinecures in our society. Now, a person of average intelligence can save a few hundred bucks in legal, medical or tax accounting fees just by spending an hour or two in cyberspace.

Like the insurance lawyers who sued Hugo Pinero in Heinlein's Life Line, we can expect the old guard to strike back and try to put the damn genie back in the bottle.

Gall Stone Links

http://www.cag.ucalgary.ca/patinfo/html/gall_bladder.html

http://www.lap-associates.com/SurgicalServices/biliary.htm

http://www.healthanswers.com/adam/top/view.asp?filename=000273.htm

http://www.medicinenet.com

 

Hepatitis Links

http://hepatitis-central.com/

http://www.hepfi.org/

http://www.hepnet.com/

For Discussion click HERE.

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