Mangled In The Medical Machine - 4

Sometimes I wish in reality there were more doctors like Patch Adams or Gregory House from the FOX show "House".

Here is a cornucopia of miscellaneous manglings I've personally seen over the years. It would be different if they had taken place in some back woods clinic or hospital in Possum's Balls, West Virginia or Moose Whizz Wyoming, but these all occurred in Boston, Massachusetts, one of the country's supposedly more enlightened medical meccas. These are in no chronological order

After all the hemming, hawing and foot dragging by neurologists, neurosurgeons, orthopedic surgeons, tests and scans, everyone had a differing opinion of what was causing all the pain and muscle wasting in my legs. I was having lunch at the Living Center sitting at the same table as a Wiccan priest. Now I'm not big on witches or shamans, but he ran his hand along my back, never actually touching me. I felt a strange tingling sensation like a mild electric shock as he passed his hand along my spine. He stopped, "here.....and here", the energy is being blocked. This is serious and they should do something to remove the pressure." His hand stopped at the T12/L1 and L3/L4, exactly where the MRI showed the spinal cord being strangled. I would feel funny telling a Harvard trained neurosurgeon that based on something a witch told me, they should look here and here.

Western medicine is nothing but high tech voodoo anyway. One time I was frustrated and a bit pissed that every few months my doctor would tell me what was "gospel" about HIV treatment was now, there was something newer and more accurate now. I politely told him, "ya know Doc, this isn't aimed at you personally, but 100 years ago, they were drilling holes on people's heads to let demons out and covering patients in leeches to suck out bad blood." He chucked, "actually they still drill holes in people's heads to relieve intracranial pressure and leeches are being used again. Actually covering festering wounds with maggots cleans a wound better than modern medical procedures. Next there'll be a news item that a voodoo priest shaking a dead chicken over a patient's body cures cancer.

Things get especially complicated with conditions like HIV, autoimmune diseases, cancer or any other chronic illness. HIV has the added bonus of having a lot of excess baggage attached to it in the form of stigmas.

In June of 1990 I bean running high fevers, had raging headaches and a horrible runny rash broke out on my face. My face and head felt like a psycho was going nuts on it with a nail gun. Since I didn't have a regular doctor yet, Fenway Community Health was the most convenient clinic to visit. The nurse got one look at me, called in a doctor and immediately sent me to the hospital emergency room. After a pleasant 6 hour wait, a triage nurse called me in, got one look at me and hastily left the room. Five minutes later an army of doctors and interns began poking and prodding with gloved hands, asking tons of questions, then finally the big cheese said, "you have herpes zoster or shingles as you may know it. You are not going anywhere. Shingles above the neck can be fatal. So I was whisked into a waiting area until a room was ready, a nice hermetically sealed cubicle in an isolation ward where everyone who entered were dressed like I was in a level 4 containment area. I was not aware that if I came in contact with someone who never had chicken pox, they could get it and it could be serious.

The topic of HIV came up so the next round of questions were about my lifestyle, "how many sexual partners have you had in the last 6 months, last year?" I replied, "honestly none, unless my left hand counts." Do you use any recreational drugs, particularly IV drugs?" I replied, "no never have, drugs scare the heck out of me plus I hate needles." How much alcohol do you drink per day?" I replied, "I do not drink at all, am in the program, sober going on 2 years." They mumbled among themselves then left the room.

A couple of days later the head doctor who was a self righteous prick entered, "all of your blood work and other labs have some back negative for drug, alcohol use and STD's." He almost seemed disappointed that I was telling the truth. I wound up spending a week as an inmate on continuous IV Acyclovir and antibiotics as I had picked up a staph infection while in the hospital.

On the day I was discharged the doctors highly recommended I find a dedicated primary care doctor, then escorted me out, of course stopping at billing before I left, "first we check the wallet for vital signs"

When I met my doctor the first thing he asked for was a transcript of the hospital records which I picked up at the hospital, clearly marked "MD eyes only" Well they were my records, so I broke the seal and spent an hour in a coffee shop reading the reports. A few comments that the arrogant shit doctor wrote shocked me, "patient was difficult, kept asking too many questions, assume has paranoid psychological problem. Patient denies use of alcohol or drugs, tests did return negative, but assume a lifetime problem with substance abuse. Patient claims to not have had sexual contact in past year. When asked if he was homosexual his reply was "does that matter." Assume patient is promiscuous homosexual."

When I got to see my doctor confessed I peeked at my record and I'm a bit upset, he replied, "good, you have a right to see it. What was it that upset you?" We discussed the opinions of the hospital staff and he said that there are some who have an agenda, and axe to grind and I must be very careful what I say when in a medical setting. Some people will use you words against me. So now there should be a medical Miranda Act. "You have the right to remain silent, anything you say can and will be held against you in a medical tribunal."

When my back and leg condition began getting worse, my doctor sent me in for a CAT scan of my lower back. I was in the elevator in the main medical building along with a group of young doctors and interns. They were rabbling about the AIDS problem. One pipes up saying, "I have the solution to AIDS, lethal injection on admission," followed by chuckles, guffaws and high five's all around. I silently got off the elevator at the designated floor, but their comments gnawed at me. These are our up and coming medical providers! When I saw my doctor I mentioned the comments, he almost grated his teeth, "did you write down the names from the name tags of any of the people who said that?" My doctor was clearly upset, "in this day and age there is no place for that sort of attitude. It's too bad you didn't get names." But then it's my word against theirs, and who are people in power going to believe, Harvard trained doctors or some average slob off the street?

When I first began taking HIV meds, I went to my local CVS pharmacy. The head pharmacist, an older queenie acting (obviously gay) man grabbed the scripts, then tossed them back at me, "we don't fill those sorts of presciptions here," Acting like I was asking to buy weapons grade plutonium, nerve gas and heroin. He had this look of utter disgust as he passed the scripts back across the countere at me. Now I knew other guys who were getting their HIV meds at this same store. I felt about 6" tall and left, returning later to be served by an older black woman who looked at them, "when you want to pick these up honey. They can be ready in a half hour." I voiced my complaint against the old poofter, but never heard anything back regarding the issue. All I know is from that time in, he would take the script, check my insurance and say, "come back in 15-20 minutes and they should be ready." So even the prescribed medications have stigma attached to them in teh eyes of some pharmacists, "I know what you are and what you did last Summer."

I've noticed a big change for the worse in treatment and attitudes of medical and hospital staff. Everyone looks totally shagged out, nurses are forced to work douple, even triple shifts due to staffing cutbacks to save money. Doctors are juggling 2-3-4 patients during the same time slots. A doctor appointment feels like I'm in the game "Beat the Clock", "you have 30 seconds to tell me everything that's going on and I have one minute to make some sort of diagnosis." In a way I feel bad since doctors and nurses are at the mercy of insurance and pharmaceutical companies, who make all the rules and call the shots. It is no longer the patient who comes first, but the bottom line. Welcome to the best medical system in the world that money can buy.

A few medical staffers will only say this off the record, but with HIV we are treated like third class citizens, "oh that one has AIDS, use the big stitches, hurry up and don't worry about scheduling more tests and follow ups, they're not worth the effort. Unfortunately another factor falls in the same category, getting older. I'm pushing 60 now, and once you're over 50, it's all downhill unless you're influential and/or very wealthy, "don't waste any more time with him, he'll croak within the next 3-7 years anyway. Our society, as much as it denies it, worships youth and beauty. Those of us who are older are treated like obsolete computers, disposable and a general drain on the system.

I was in the hospital for 8 days in 2005 a few weeks after I went off the HIV cocktail. Every specialist they could find was dragged in since it appeared it looked like I was dieing. All tests, scans and labs came back normal but I was running a 105 degree fever, my heart rate was totally ape shit, it looked like my renal system was calling it quits and the pain from head to toe was indescribable.

I remember one night a tech was sent in to hook me up to an EKG. She had some name like Mugumba and didn't speak a word of English (very few do) and could not figure out which wires went where. She began fidgeting and mumbling in Spanish, and finally I rang for the nurse after I had hooked myself up to the monitor. Hell, I'de seen it done so many times I knew where all the electrodes were placed. The nurse, a frazzled looking young white woman (who actually spoke English) came in and dismissed Mugumba. I whispered to her, "ya know, I know times are tough, and hospitals are hiring illegals right off banana boats to work in hospitals, but this is my and other people's lives they're screwing with." She giggled and totally agreed that the system is totally fucked up.

And I won't go into the gory details of who many times the hospital messed up my medications, bringing the wrong medications. Again this isn't some stink water hick hospital, but one of Boston's well known teaching hospitals. Actually all hospitals are teaching hospitals. Once you wind up in one as a patient, you quickly learn that you don't want to get sick again.

I learned early on, back in the mid 80's that when you're living with a chronic illness like HIV or other tough nut conditions, you almost have to be your own doctor and do your own research. There are actually a lot of doctors who enjoy dealing and chatting with patients that they don't have to talk down to, who understand and can converse with them intelligently about medical conditions and treatments.

It's your life and your health on the line here. The system is to overextended to just go on blind faith that the medical high priests will do the right thing. You must become your own advocate and part of the medical team.