Quote of the week:

“They'd have to shoot me to get me back to Illnois."

~Abraham Lincoln upon going to WDC to become president

Monday, November 26, 2007

My medical horror stories Part I or How Doctors (sometimes DON'T) Think ©wtf/rle

My medical horror stories, Part I or How Doctors (sometimes DON'T) Think ©wtf/rle

This is the first in a series of true life actual stories of my experiences with the healthcare system.

I just finished reading the book, "How Doctors Think", by Jerome Groopman. I also had the opportunity to see and hear him speak recently at a conference. I was pleasantly surprised that it was NOT a dry, academic tome. He used stories of physicians as examples to the physicians' thought processes. I found the book facinating, and was able to identify the traits he describes on many of the physicians of whom I've been a patient.

In Spring of 1995, I moved to Chicago. Later that year, I got a bad cold, that turned into a bronchial infection. That was nothing unusual, as my colds have always gone to my chest.

Only, they started happening more frequently, and the occasional sinus infection would get thrown in for good measure. At one point I said to my then PCP, "There's something wrong with me that you're not figuring out. I shouldn't be getting sick all the time like this." I saw specialists. Being a gay man, the ID doc (a woman) concluded that I must have been testing false negatives for HIV. This would happen again a number of years later. For any physicians who may be reading this, let me state for the record, this is a really shitty thing to do to a patient, and it really fucks with one's head. Groopman talks about how physicians see patterns; look for patterns; and sometime try to make patterns that don't quite fit, because that's how it 'should' be and the odds/probability says it should be that way. I used to joke that I was a walking CPC; that I was the sickest non-immuno-compromised person I know. My HIV+ friends were healthier than me. (The joke was on me.)

In May of 1997, I had surgery on my R should (acromioplasty, and removal of bone spurs on my clavical, and some minor repair to the rotator cuff). The recovery went bad. I developed adhesions. At the time I was on an HMO. When I had my first meeting with the surgeon ("L"), I didn't like him. I told my PCP ("H"). He would not make a referral to anyone else as "this is best surgeon in the city". I knew who I wanted. It wasn't this guy. I wanted a sports med orthopaedic surgeon doc ("B") that I knew and who had done some programs for me. The PCP would not acquiesce. At that point in time, I (foolishly) trusted the PCP. ALWAYS TRUST YOUR GUT INSTINCT! It's your health they're screwing with. When I went for follow-ups, I told the surgeon, "Something is not right." I was not intimating that he did something wrong, but that I wasn't healing the way I should be. First, it was going way too slowly. The general anesthesia seemed have hold over effects. I was lethargic, range of motion was not where it should be, and I was still in a lot of pain. He tried to tell me it was sympathetic reflex syndrome.
The day the proverbial shit hit the fan was when I saw the surgeon "L" again. He agreed that maybe something was not right and wanted to get some films and run more tests. Without going into detail, the next day when I see my PCP "H", the surgeon "L" told him the antithesis of what my conversation with him "L" had been. By this point I was sufficiently pissed. I was on the phone with the insurance co. [side note: Let me state for the record they were some of the biggest assholes I've ever had the displeasure of dealing with. Despite their name, they were anything but humane). They don't like people who know healthcare and how to navigate the system. As frustrated and pissed as I was, I couldn't help but think of the majority of the population who DON'T know how to navigate the system, and get screwed by insurance.] Additionally, the customer service (and I use this monkier loosely) was nothing short of a rude bitch. I had never been treated so dismissively rude by someone who's job is to deal with the public and 'customers' of that institution. Again, she didn't like people who know how to navigate the healthcare system, and who refuse to be duped. I filed a formal complaint with the hospital and the IL Dept. of Insurance. I'm not one to casually do something like that.

I wanted a second opinion, and I wanted it from the doc ("B") I originally wanted to do the surgery. I few days later I get a registered "Dear John" letter from the insurance company 'divorcing' me from my PCP "H", and that I need to make arrangements to get my medical records. WHen I call "H", he says he has no idea of what I'm talking about and that he did not initiate the 'divorce' procedings. To this day, I don't know whether he was as clueless as me, or whether he was feigning ignorance.

I meet with ("P") an internist that I used to work with at a hospital in the burbs. The insurance co, guaranteed that he "P" could make the referral to the surgeon "B" I wanted. After a thorough H&P, he writes the referral. Insurance refuses to accept it because "B" is not at the hospital that my PCP was at, and that I would have to have surgery at "P's" hospital, by one of the staff surgeons. Yes, after I made sure and confirmed with the insurance co. that they would accept the referral from "P" to "B". I had to go through this routine again with some new (unknown "U") PCP, because he could write the referral to the "B". So, I essentially used "U" to get the damn slip of paper that the HMO would accept, and never saw him again. "B" gave the adhesion dx, and recommneds steroid injections in the shoulder [there went all of my Olympic dreams!], as he didn't want to repeat surgery so soon. The nurse fails to mix the three solutions together in one syringe, so I get stabbed 3 times. And, yes, it hurt like a MF--3x. The injections do not help. So, "B" says he thinks he'll have to cut me. He wants to do MUA (Manipulation Under Anesthesia) and a debridement. When "B" came up to check on me in recovery, he said, "Your shoulder started, 'snap, crackle and popping' almost immediately! There were some really bad adhessions!"
"Did you think I was lying all this time? I told you I was in pain." He told me it should have been detected almost immediately (like when I first said, "something's not right" the first time to "H".
I didn't follow into the normal protocol or practice guidelines of how recovery from acromioplasty, and "L" didn't want to consider other options, especially when it might have meant error or his part. [I think the surgery was done correctly, but the follow-up was where he was negligent.--

Surgeon "B"listened to me, the patient; he didn't dismiss me as being unable to assess what is "normal" for me. He respected me as an intelligent, capable human being. He collected as much information as he could to make the DD.

Surgeons tend to get a bad rap from other physicians and healthcare professionals. I always defended them, as I had mostly had good experiences and good working relationships with them. The time I get the jerk surgeon is not working with him, but when he's cutting on me. This is indicative of how my luck runs.

Again, my recovery was much more protracted than it should have been. But I did not develop adhesions this time. I started PT/movement the next day. These surgeries were, I believe the catapulting event(s) that set things in motion for what was to follow. Stay tuned for the next episode.

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