Saturday, January 26, 2008

Aliens from Outer Space, Part 1

After nearly dying from an anaphylactic reaction to penicillin in 1980, I stayed allergic.

I was allergic to everything I encountered.

The ER episode was on a Saturday or Sunday night. On Monday, I was sent to a Chicago clinic run by the allergy department at Northwestern, a highly regarded medical school. The professors running the clinic were considered a bit radical at the time.

When I got to the clinic, I was told the doctor was very busy and seeing another patient. I knew it was a teaching facility that saw people like me a lot - ones who couldn't pay, but had something interesting for the docs to treat. There were always a good five or six high-grade post graduate medical associates there. Full doctors learning a specialty.

After waiting for quite some time - and unaccustomed still to my new status as poor and insignificant and expected to wait uncomplaining - I started walking around looking. I found Dr. Zimmerman, identified by his name tag, sitting in a little corner somewhere, resting and having a cup of coffee.

--Hi. I'm your next patient, been waiting a long time. Interesting *patient* you've got there.

In a heavy German accent he replied, --Vell, efen busy doctors haf to haf some rest and coffee sometimes, no?

--Sure. In fact that's so important, it should be scheduled into your day. But not at the same time a patient is scheduled to see you.

I got my exam room assignment, and soon Dr. Z came in, followed by a troop of eager-looking students. Their faces wore such a hopeful, interested, vulnerable look, and I felt so much like a long-waiting bug under a microscope, I - well, I just couldn't help myself there - I said a bit sarcastically, --Ah! Here to "practice" our medicine today, are we?

As a younger woman, I must confess, I had a big mouth sometimes. In my defense, I really did keep it shut almost all the time.

Almost.

Their poor little happy faces fell and I was sorry. Still, I hadn't figured on the price I'd have to pay for that crack later on.

Just as he was when I caught him on his coffee break, Dr. Z was totally unfazed. He began talking in his heavy accent. The students were startled by his voice, but then looked back at all the things he was pointing out on me. He was quite excited by my display of allergic rashes, so many different kinds all at once, very unusual, we're lucky to see this today. Nearly rubbing his hands in glee.

Fife disstinct rrashes - and can you describe vut is different in each, and vy? Vut's de name of dis one? Dat one?

Vy de brrilliant red patches in de palms and elsevere, you read about dis from de ER report, traces still remain. Is it purpura? No, purpura iss darker and defelops differently, can be palpable too. Dis is an indication dat de blood vesssels had veakened and vere no lonker containing de plasma and other blood constituents; and vut is de name and mekanism for dat, pleasse? De palmss ve can expect, yess? But vy to see dem elsevere only on dose joints vere de patient hass rrhematoid arthrritis?

He was clearly a very good teacher. I had some questions of my own, but I saved them for later. Not wanting to interrupt, you see.

At the age of 22, I looked much different than I do today. I was smack dab in that phase of our lives I call *Youthful Gorgeousness,* as opposed to my *Old Crone* status of today. The rashes and lingering signs of angioedema (huge blue-white cone-shaped hives) and erythema (the brilliant blood red patches on my palms and joints) were strikingly noticeable.

Dr. Z went over the angioedema, erythema, itching - I was still covered head to toe in tiny scratches from my fingernails - and the chest pain and throat pain. The finger that had started to split apart, swollen beyond containment from an angioedema hive. He discussed why my tryptase was normal, even though I displayed classic hallmarks of full anaphylaxis. (Tryptase tests to identify anaphylaxis are no longer used much, these days, apparently being inaccurate too often.)

The docs explained to me then and in later exams that sometimes, after anaphylaxis, a patient continues to be allergic to most everything they come in contact with. They didn't know why this happens. There was no official name for it yet. They themselves sometimes called it "idiopathic allergy syndrome," but not everyone called it that. They told me that I'd need to get an Ana-kit and stay on antihistamines (Benadryl and Atarax) for as long as this continued.

Because it might not be a permanent condition, I was instructed on how to test to see if I was recovering from it. If, in my daily life, I seemed less reactive, then after time I could try to decrease my doses of antihistamine. Very slowly and carefully please! If the symptoms reappeared, if I saw hives, rashes, itching, breathing problems, then I must immediately return to the original dose. Go to the ER if it didn't get better right away.

To be told that a patient could not only take part in diagnosing the severity of a condition, but actually even watch for symptoms and adjust meds accordingly, was absolutely radical at the time. Patients were NEVER directly involved in their treatment like this. Almost universally, they were considered by the medical community to be ignorant, emotional, illogical, impulsive, histrionic hicks that had no business participating in their own medical treatment in any way, shape or form except for taking meds. All else was the doctor's job, and his alone.

The reasoning went like this: If patients learned anything about diseases or symptoms, then they'd be hypochondriacs and think they had every illness described to them. And how did docs know this was true? Because they'd done the same thing themselves in medical school. So they had A Responsibility to prevent this from happening to the foolish unwashed masses they saw.

Back then, even asking the doctor a simple question usually got a shocked and hostile reaction. If they deigned to answer, the reply would often come in baby-talk or dumbed-down words, and dismissive in the extreme. A doctor was God, and the little lamb did not question Him.

Old school. Little did I know that medical treatment would take such a turn over the next fifteen years, that having patients ask questions and learn something about their medical care would be considered desirable and beneficial - and very much within the patient's rights.

The visit then turned to Patient Question time. Dr. Z had already introduced the student docs, who were all men; and one of them had proved it by politely leering at me, --The good news is, you don't LOOK that bad!, accompanied by a standard-issue playground bully wolfish grin. As an attractive young woman, the only woman present, sitting half-naked in a roomful of men, this was more an unsafe feeling than a friendly one.

Dr. Z wanted to know if I had any questions. Yes. How long might I be sick? He said he had no idea. For some, it was lifelong. For others, it went away in a few months or a couple of years. Even at that, it might return after being in remission.

The best way to get better was to avoid common allergens. I would remain in a state of constant allergic reaction for some period of time. The underlying condition was fairly static that way. However, certain allergens might increase the reaction quite noticeably - the more changeable or dynamic half of the equation. Avoid those substances! Learn about common allergens and avoid them too - shellfish, peanuts, etc. Watch yourself and learn what specific items you react more to than others.

My last question was about the red patches on my palms and joints. How did that work? I was just curious, could they explain it, please, in terms I might understand?

Probably not - it required highly detailed medical terminology, that one.

Try, please?

By then we'd gotten up and were all going through a doorway.

And one student doc, one who had not smiled at all when I'd said, --practicing our medicine?-- took up the challenge. Putting his face up close to mine and staring hard into my eyes, he began an A to Z rundown on how this worked, using twenty ten-dollar medical words in each sentence. After a minute or two his face began turning red. His fellow students started tugging gently on his sleeve, muttering hey, guy, that's enough; and Dr. Z, motionless and seemingly unaware, was actually watching him carefully. The other students noticed Dr. Z and upped their efforts to shut up their buddy. By then he was literally spitting with fury into my face, spewing angry medical words at me like they were pointed darts.

They gave up being unobtrusive and pulled him away, back through the door we'd just walked through. I heard him saying, --It's the fucking tail wagging the dog, why the hell am I supposed to take that shit from a --

Dr. Z turned back to me, his face now a mask of gentleness and kindness. He wanted to know if I needed anything else he could help me with. No thank you. He set up my next appointment, loaded me with scripts, and I went home, alone, to learn to deal with my radically changed existence.

Fast forward twenty-three years later, to 1993. Seeing Dr. C, an allergist in Ft. Lauderdale, I told her about my anaphylaxis experience in Chicago. As it happened, she knew a Dr. Zimmerman! A fabulous, brilliant, world-class allergist by now. Was it really the same doctor? We talked about him, and yes, it had to be the same one. Oh, she regretted not having him in medical school, she knew him from seminars and things she'd attended...

But, she wondered - why the German accent? He didn't have an accent. He was born and raised in America and sounded like any one of us.

Now, Dr. C and I had our differences, and her complete lack of a sense of humor didn't help. I use it and I need it, and a person without one can have difficulty communicating with people like me.

She said even putting on an accent for fun wasn't something she'd ever expect of Dr. Z. Did he only do it on that first appointment, where I'd been So Rude?, rude and demanding with this great respectable renowned allergist? --No, he talked that way every visit after that too.

She shook her head. I had a feeling she didn't quite believe me. A great doc does not do something silly like that, a childish little private joke. No matter how funny it is.

Dr. C and I, we didn't last. Just too incompatible. We saw things in life very differently from each other. In the long run it couldn't work out, and it didn't.

But I'd see Dr. Z again. In a heartbeat.

I'd tell him I found out about him, too. And grin.

159 comments:

Pretty Lady said...

Certainly the attitudes instilled in Fine Young Medical Students by the industry are not conducive to good bedside manners. It's one of the many reasons I didn't go to medical school, aside from the sleep deprivation.

Glad you are continuing the story, at long last! Looking forward to all future installments!

Walrilla said...

If any of those "doctors" had ever spoken to me in that manner, he'd have picked his ass up off the floor, toothless, and in some major need of "trauma medicine". There's NO reason to speak that way to a patient, especially one in pain and fearful.

Walrilla

pepektheassassin said...

Why don't you post a picture of yourself when you were in flower, in your youthful gorgeousness, and we, all of us out here, will think of you as looking just like that, forever after!

I hope you continue to feel better.

pepektheassassin said...

All of us but Livey, that is.

k said...

Pretty Lady, as more time goes by, it seems they're getting better about those attitudes. The changes in teaching and in patient rights law that I've seen over the past couple of decades are astonishing. Even the time between your own days of contemplating med school, and now, has seen significant change.

People like you are a driving force behind that change. You see the patient as a person, a whole person, and understand that health is integrated - it's not just physical but emotional, mental, spiritual, creative - in other words, everything we have within us.

I wondered if you'd forgotten that old first installment, but only for a second. I really did know better than to think that.

Walrilla, somehow I doubt that doc would have dared speak to you that way. Now, your wife may have been a different matter - at least, as long as you weren't present.

He was so close, so "in my face," that he couldn't have been very tall. At the time, I was still only 5' 1.75" - I didn't reach my full 5' 2.5" until I was 27.

And at the time this took place, I had just left a very unhealthy relationship that started when I was 16 and more or less ended when I was 21. It was formalized when I was 22. For five years I'd been extremely controlled and brutalized by an extremely skilled, intelligent manipulator - one who'd actually studied such things as brainwashing in order to become the most effective predator he could be.

That was the summer of our separation and divorce. I was not all that good at defending myself, you see. That kind of hostility from a man seemed perfectly normal to me.

Judging from the reactions of the men around me at the time, it didn't seem all that abnormal to them, either. Not a pretty display, and one that should be covered up; but certainly nothing to be outraged about.

The treatment of male and female patients can be markedly different, back then - even among those radically "modern" docs - and still today. Walter didn't used to believe it happened like that, until he started really watching. Now, on almost every visit, he spots the disparities between the way he is treated by doc, and the way I am.

It really pisses him off, too.

That's my guy. He went from thinking it's not very bad, or maybe I'm being oversensitive, to seeing it with his own eyes - and instantly coming to my defense. Outraged at what he sees with his own eyes.

Should a doctor ever talk to a patient that way? Of course not. I agree with you, 100%.

I shall treasure the thought of you decking that jerk, and his bloody little stumps of teeth, whatever is left in his mouth.

Pepek, there's a reason I can't. See, today, those old "bad guys" from my past profession wouldn't recognise me. If I posted a pic from that time, they would.

I really don't think anyone is still harboring grudges, but you know that people can be...vindictive, for a very long time, about people like me taking action against them on behalf of the federal government. I'm not as concerned about hiding my identity as I used to be; on the other hand, posting a contemporaneous pic would be risking too much. We did get a lot of death threats, bomb threats, phone tapping, surveillance, yada yada yada. Some of this continued way after I had to quit my work.

Not to mention, I had a few serious stalkers back then. Two of them needed me to take legal action against them. Ultimately, the only thing that worked was when I threw them off my trail by carefully planned tactics. So I don't want to blow all the effort we put into that.

Sorry! Oh - and LL has seen me too. Bun and all.

Nancy said...

'Pup says there is a difference between the way our doc treats me and 'Pup.

He says the doc simplifies his language for him, and then goes into a more scientific med speak for me. I'd never noticed it, but 'Pup swears it's true.

It is one reason I like our doctor very much. He listens and takes things pretty seriously. The one time he didn't take something seriously enough was when I fainted, but after they found the Pulmonary Embolism, he's...real attentive to what I say I feel like...

I did have a doctor in college who told me that menstrual cramps were "something you girls have got to get used to"....and "aren't you sorry Eve ate the apple?"...

I reported his butt and even back in the '80's that language wasn't tolerated, even in the conservative university I attended.

Jean said...

This horrendous attitude is not limited to medical jerks, as you probably know.
I have dealt with 'the attitude' from some engineers where I work.
I graced them with my own version of a 'come to jesus meeting'.
Basically, it is this... do not assume I am too stupid to understand you. I have no problem asking for an explanation of something that is unclear. Do not treat me like a three-year-old!
And, that goes for auto mechanics and plummers and contractors and...and...and... grrrrrrrr.

Marc said...

Now I feel really guilty. But I was just teasing....

Marc said...

OOoops. Not marc, but Pepek here.

Livey said...

I happen to think she is still gorgeous Pepek!

Mickysolo said...

You've inspired me again. I had an experience in the late 70's when a group of cardiologists were fighting over my need of heart surgery. It will be in my blog soon -- mikysolo.blogspot.com.

k said...

nancy, a doc who considers each patient separately like that is priceless. 'Pup may be able to handle the language better than the doc thinks, but being raised with a jillion RN's in the family - starting with your mother - has got to matter when you talk to a doc.

He doesn't just assume the guy is Smart and the woman is Not. He's thinking about each of you.

Jean, doesn't it get, just, tiresome? You'd think it would be different after all these years. And it is better, I can tell.

Yet the "better" is still SO lacking sometimes...

Sometimes, when they start that stuff with me, I start talking to them like they were the children. You know, with that patronizing uhHUH...uhHUH...bright happy mommy voice? heh! Generally speaking, they don't like that very much.

I have a fun bricklaying story about a guy like that. I'll try to remember to post it soon.

Miss Pepek as Marc, DON'T feel guilty! Good heavens, woman, whatever for?!? Most people would never connect this quiet little middle-aged woman on a scooter, bun and glasses included, with a person that others would like to see harmed. Gracious no! At this point I'm as intimidating as a toothless mangy old dog. And glad of it, too.

Funny thing is, I never ever wanted to BE intimidating or powerful. Not my style. First thing I always tried to do was put those "bad" borrowers at ease, even the out and out crooks. I was always perfectly polite to them, much to the amusement of my peers.

Polite but firm, you know? When my negotiation efforts failed, I'd very courteously tell them I'd have to do such and so next, the lawsuit was already filed, tell your attorney to watch their mail for it...

Livey, that was sweet, and I appreciate the sentiment behind it. But - I'm not sure I could explain this in a way others would ever understand - unfortunately, statements like that make me feel bad instead of good.

I know it's not the first time you said it either; you're being perfectly consistent. But to me it seems unreal, and unreal is very unsettling to me.

I see myself in the mirror, and in the mirror of the eyes of people I meet. Strangers and friends and acquaintances and family. And I see them recoil in horror, avert their eyes, all that...Even you said you had nightmares that you'd wake up with legs that looked like mine do.

It actually doesn't bother me the way it might bother others. For the first time in many years I feel safe, this way. That's a very good thing, especially when I'm physically vulnerable now. Can't run far, can't fight fast.

mickey, hi! And a very belated New Year's to you. I just realized you were on my East Coast list as I tried to run around saying Happy New Year's to the entire blogroll, before the ball dropped in their respective time zones, and I kept falling asleep in my office chair.

I'm looking forward to your new post. We've been comrades-in-arms on too many other health fronts already. Now with Walter's triple bypass and pacemaker, I suddenly feel very drawn to any heart surgery issues out there.

Did you know morris just had a quintuple bypass?!? Excuse me, please, morris - I still can't get over that! Walter and Dad tell me that's the max.

Hmmmm. "Maximum Morris." Got a nice ring to it...

Livey said...

I mean it from the bottom of my heart. You are a beautiful woman! I just wish you could see it!

Mr Buzz has legs that look just like yours too.

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