Trust Us, We're Doctors - Part 1
Justin J. (c) October, 2003

"I'm not a doctor in real life, but I play one on TV."
"Damn it Jim! I'm a doctor, not a warp drive engineer."
"Ask your doctor if Gullibrex is right for you.."
"Mister Smith, the lab results came back,
I have some bad news and some good news."
"May I see your insurance card please....."

The Doctor Will See You Now

Some readers may ask, "Harumph! What makes you qualified to comment on the medical profession anyway?" My answer is that, well I didn't attend medical school, but having lived with HIV for 20 years, I have had a lot of time to research medical conditions, plus the state of the "Industry". I also had a few nurses among my relatives and I'm a nosy SOB by nature. I was born curious, analyzing and researching whatever subject was eating away at me, probably due to inheriting my father's inborn curiousity, drive to wade through all the bullshit and get to the bottom of things.

The way I look at it, the patient has to begin by being his or her own advocate, calling in additional troops when necessary to get something done. With the current dysfunctional state of American medical care, don't count on a lot of help or information from the professionals, who are too over worked, under staffed, burned out, managed and cost reduced to offer much beyond a "let's wait and see what develops", "I'm so sorry", "Take two aspirin and call me in the morning unless you die first", "I can fit you in for a 15 minute consultation 6 weeks from next Tuesday. That's the best I can do right now"; you get my general drift.

I have been active on the Internet since the early 80's, back when you really had to work to mine any data. There was no Web, but if your knew a handful of arcane commands and were familiar with the tools of that era, there was UseNet news groups, FTP, Gopher, Archie, Veronica among other means of doing searches. I was informed by hospital staff back in 1982 that there was something definitely wrong with my immune system after a week long vacation in the hospital for blood poisoning. The blood poisoning was brought on by a nick from a knife while trimming fat from a piece of raw steak before broiling it, but more on that in the last part of this series. I still believe it had something to do with the blood transfusions I received while in the hospital, but I may be wrong. Before the age of AIDS, I'm under the impression that doctors didn't know or care much about the full function of our internal early warning defense systems. It was only after I had to face my condition a few years later that I really began to dig for information from around the world with my electronic pick axe, sledge hammer and chisels. I urge anyone who finds themselves faced with a life threatening medical condition to get online or get to a library and find all the information you can from reliable medical texts and journals, then when it comes time to meet with your health care providers, you can at least understand some of the medical mumbo-jumbo they're throwing at you. Warning: Some doctors are very threatened by patients who do their own homework, others welcome it.

The Way We Were

I'm sure a lot of people who read this may be younger and heard the urban legends that a long time ago, doctors actually made house calls. I;ll give me age away by saying I was a post World War II baby, on the cusp of the baby boom. My family, as many others, had a family doctor who made house calls. My family didn't have much money and there were times when Mom and Dad could not afford to pay the doctor for his visit. His reply according to my mother was, "please don't worry about, I just care about getting young Justin back to feeling right as rain; we're all friends after all." When I was much older my mother was going through some old albums and keepsakes and pulled out the hospital from my delivery. She had a difficult time delivering me and was in the hospital for over 2 weeks. The total bill was under $200. Mom told me that the hospital wrote most of it off. Let's see them do that today!

I still remember our family doctor, a kindly older man who smoked cigars, drove a big black Buick and carried a black bag. Regardless of who he was coming to see in our house, he always had a candy bar or lollipops for me. I wonder at times if we were better off before the advent of high tech medicine, witth an array of very expensive machines that go "Ping!", elaborate testing procedures and batallions of specialists. To quote my grandmother, "too many cooks spoil the broth." My grandmother had a simple outlook on health care, Witch Hazel, a shot of whiskey with a bit of honey or chicken soup could cure just about everything.

I can hear some of you out there mumbling as you read this, "Omigod! what sort of Barbaric world did you come from?" I may seem old fashioned, but it seems to me people didn't get nearly as sick with the array of death defying illnesses when things kinder, gentler and simpler as they do today. When they died, they passed a lot more quickly and with dignity. There used to be a yogurt commercial on TV claiming that people in Soviet Georgia lived to be 120 years old, of course they ate lots of yogurt. They probably didn't live at the hazardous pace that most of us in 21st century Western countries (The US leads the pack) do either.

The Current Problem

I began to notice a change in the quantity, availability and quality of health care toward the end of the 1970's. The Boston area, along with many other cities and towns used to have walk in and evening clinics. Many would treat you regardless of ability to pay, or had a box at the front desk for donations. I personally relied on these until they began disappearing due to budget cuts, buyouts and managed care. An overnight stay in a hospital would run you $75 to $125 a night. It's hard to find a hotel that you can stay in for that amount today.

Here's a short list of what I think is broken in the American medical system:

As you may suspect, I'm very suspicious of bean counters. My college major was in a technical field, but I also had to take accounting and finance courses. To be honest the kids that were going on toward an MBA in Finance/Accounting gave me the creeps. I place Marketing and Law types as a close second on the creepazoid scale.

As fate would have it, my entire career has been spent as a software developer in Accounting, Finance and Marketing groups. The vast majority of my career was spent at a very successful Fortune 500 high tech company that was run by engineer and geek types. Then around 1980 I began hearing more and more about globalization, mergers, consolidations, the bottom line, out sourcing, right sizing and all the other buzz words that give MBA's wet dreams. Shortly before our beloved founder and CEO was ousted by a new wave of MBA trained storm troopers, the new leaders promised the dawn of a bright future, lead by Finance and Marketing. We were now a Marketing and Bean Counter directed company, along with a lot of the other Fortune 500 lemmings who were marching their troops into a gaping chasm. Our sales, profits and customer base began shrinking faster than a $2 cotton tee shirt washed in hot water. After the new vanguard successfully sent our founder packing, business fell even faster, as they sold off profitable divisions for a tidy sum, blaming our company founder's past style for their failure. This sounds a lot like the administration that is currently running the United States into the ground, headed up my a "C" average MBA, who's only interest are the spoils to be divided between him and his friends.

A wise man once said, "money is the root of all evil". I think the obsessive quest for money, more money and more more MORE money is not the root of evil, just plain EVIL. This is playing a big part of destroying the medical system, along with everythings it digs it's blood soaked claws into.

The Medical Miranda Act - Loose Lips

I have a word of warning for the unsuspecting lucky recipient, in need of health care, "be very careful what you say and/or write down during an intake consulation, scheduled appointment or hospital visit. Anything you say can and will be held against you in your medical records, which may filter through to your insurance provider, police, Department of Homeland Security or even God. I'll give you a real life example from my own experience.

I first had my HIV status confirnmed in 1985, but did not seek out a personal physician until 5 years later. A rash had broken out on my face, and within 24 hours was getting much worse. The closest way to describe the pain was that it felt as someone was driving nails into my face and head with a pneumatic nail gun. Sores began opening on my face, which sent me to the walk in clinic I used on a Saturday morning. The nurse took one look at me, made a quick phone call and told me to get to the emergency ASAP!

When I arrived at the ER, I was finally called in to an examination room after a brief 5 hour wait, the presiding doctor took one look at me and yelled, "nurse we have an admission here for isolation." I asked why, his reply, "you have Herpes Zoster above the neck, and it could become very serious", me replying, "I have shingles?"

He looked at me hissing, "then you must have AIDS. hardly anyone under the age of 65 EVER develops shingles unless they have AIDS." (I have learned since that this is total and utter BS).

Next came a barrage of questions,

Doc Mengela, "Are you currently sexually active?"

Moi, "No not really, a couple of years ago once or twice, but nothing since."

Doc Mengela, "Any recreational drug use current or past, be honest ?"

Moi, "Does coffee count? (trying to lighten things up). back in the 60's I tried smoking pot and didn't like how it made me feel, never tried any othder drugs after that."

Doc Mengela, "Alcohol, how much do you drink, daily, weekly, monthly?"

Moi, "I grew up in an alcoholic family, and yes I'm a recovering alcoholic, been sober now for 5 years."

Doc Mengela, "Good for you. Do you know your HIV status?" 

Moi, "Not sure, never been tested. (ok I lied to him here)"

Doc Mengela, "Uh-huh, I see"

From here he lead me through a long interrogational list of questions about any other diseases me or my family have had, if I had insurance (most important of all).

He asked if I had been hospitalized at any time during the past 5 to 10 years, "yes for blood poisoning from a cut in 1982." His reply surprised me, "it is NOT blood poisoning, the condition's proper name is Septicemia, s-e-p-t-i-c-e-m-i-a." I replied, "oh, sorry, whatever." He then asked, "anything else?" I told him about 2 months later I came down with what seemed like a very strange case of the flu, very high fevers, night sweats, very weak. He grumbled, "that's probably when you seroconverted," then he left, frantically making notes in my record.

I spent 5 days in the hospital, not knowing how serious having shingles aobove teh nec k line could be. There was a second doctor, a young woman intern, who also took care of me. She was a true angel. The medical profession had not had a chance to make her jaded and cynical yet. When she would get off her shirt, she came in my room and we just chatted, one person to another about a lot of things, life, books, movies, hobbies, recovery, etc. I told her I didn;t particularly like other doctor, who I found out was her supervisor, "yeah he can gbe a real as hole at times, try not to let him get to you", sighing, "I have to work with him every day." 

A couple of the nurses would also drop by to chat after their shifts. I don't know if they felt bad that I had no visitors or they just enjoyed my company; I made them laugh a lot. One came from an alcoholic family and was in Al-Anon, so we talked about recovery issues whenever she visited me.

Lucklilly it was the sweet young female intern who came in to process me out. She asked how I felt about going home and handed me a couple of prescriptions, "if you have any questions or the shingles get worse here's my card. Do you have a primary care physician? If you don;t I can reccommend on to you." I told her I didn't and so long as it was not Doctor Mengela, I would appreciate any suggestions. She said she would love to have me as a patient, but was still interning. She wrote down some names and numbers, shook my hand, wished me luck and told me I was free to check out any time.

When I got home I began following up her leads. It seemed that every single doctor had a 6 to 9 month waiting list or were not accepting any new patients at this time. I called up a friend who had AIDS, asking if he could reccommend a good doctor. He told me his doctor was booked solid, but I might want to try Fenway Community Health (a mostly gay and lesbian clinic). He said, "personally I don't like Fenway, but a friend of mine's doctor is new there and I think he's the medical director. My friend likes him. have you been retested since 85," asked? I replied, "no I was tested twice in 85, one came back positive and the other inconclusive." He then said, "well get tested again first. There were a lot of false positives when the test first came out, you'll probably be fine, you're probably not even positive."

I called Fenway to make an appointment for an anonymous test and was given an ID number. They did not ask for my name. A few day later a nurse drew blood and told me to call in two weeks for a counseling session, where I would be given my test results.

Two weeks later I called and was told that my results were in and could I come in later that day. I was on vacation that week, it was July 11, I told her that would be fine. When I arrived I was asked for the ID number I was given, and after what seemed like an eternity (more like 10 minutes) I was called into a small room. I motherly looking woman with long gray hair greeted me, "do you have your ID number?" I told her the number as she thumbed through a large computer printout, "here it is", the look on her face changing from a warm smile to one of deep concern. She reached behind her, grabbing a large plain manilla envelope, which she handed to me, sighing, "I'm sorry, but your test did come back positive." We talked for almost an hour, her asking if I had a regular doctor. I told her no, I didn't and she said that they had a number of fine doctors at Fenway, and for HIV care I came to the right place. I asked her if the new medical director was accepting new patients, her replying, "yes he is in fact." I went to the front desk and booked an initial appointment with him as a new patient, then caught the subway back home.

I'll admit I was nervous about seeing a doctor, since I had always been the type that avoided doctors unless I was at death's door. I arrived at the appointed time and after a short wait a nurse called me in to take my vitals, telling me that the doctor would be with me shortly. A few minutes later the doctor (who has been my primary care for going on 15 years) came in and shook my hand. It was a long visit, taking in my personal and family medical history, then a top to bottom physical exam, plus having abotu a quart of blood drawn for lab tests. They also did a TB test and sent me to the hospital for chest X-Rays. I told him I had been recently hospitalized for shingles. He said it would be helpful if I would sign a release to have the records transferred to him, I could either pick them up or have them mailed to him.

It was still Summer and I was taking a second week vacation, so dropped by the hospital to get my records. I planned this to coincide with my followup doctor appointment. The records were in a large sealed envelope "Patient Confidential - Doctors and God's eyes only" I may have committed a grave sin, but I stopped in a coffee shop, and while having coffee, broke the seal and read the transcript, after all, this was about me, and being a nosy bastard I anted to see what was on the record.

Most of the entries were made by (who I referred to Dr Mengela) the pompous doc that treated me in the hospital. If you're wondering why I have rambled on before making my point about watching what you say, remember my initial meeting with Dr Mengela, where he grilled me for an hour. Here are some of the comments he made.

Patient is a promiscuous homosexual.

Patient denied HIV status, assume infected. Showed neglect on claiming to have never been tested, could be a public health hazard to others.

Patient admitted to life long substance abuse problem, denies using drugs or alcohol. Blood tests showed no traces of drugs or alcohol. No visible needle marks on arms.

Patient was hostile and uncooperative.

Patient claimed he had "Blood Poisoning - HA HA". Claimed it was from a knife cut while preparing meal. Sounded suspicious, probably priot IV drug user

There were a lot of other comments, but the ones I've listed about set the tone for the entire report. Interesting but I never mentioned benig gay, only said that I had 1 or 2 sexual contacts in the past few years. I told him I had been sober for 5 years, he lever listed that, only that I had a life long history of drug abuse. And yes, he actually made the sarcastic "HA HA" entry regarding that I had bloo....I mean s-e-p-t-i-c-e-m-i-a.

I read through the report twice; my blood was boiling! I headed over to Fenway for my appointment, figuring I would get a talking to for peeking in my hospital transcript. My new doctor greeted me and we went over of my labs and tests; chest X-Ray - clear, TB test - negative, all other blood work normal, well or course except immune functions. He looked at me, "you first T cell tests were actually excellent 775 with a T4/T8 ratio of 1.7"

 

Shalom, Ray