Monday, January 28, 2008

Aliens from Outer Space, Part 2

Here's *Aliens Part 1,* the post below. (Actually, it really began with this post. If you like to be sure to go in order, and all.)

* * * * *

In 1994, living in Florida now, I'd been referred to a wonderful elderly allergist in Boca Raton. His name was Dr. Neil Henderson. He'd worked for 25 years as a New York pediatrician, moved to Florida, and spent the next 25 years as an allergist. I found out later he'd even had a cable TV show dealing with allergies.

One of his offices had an enormous stuffed gorilla sitting in a corner holding a cat. That HAD to be Koko and All Ball, her beloved pet tailless kitten that was hit by a car and killed one day. Koko, you see, is the first famous ASL (sign language) speaking gorilla. I never found out why the stuffed gorilla was there, or even confirmed it was Koko and All Ball. I asked an associate doc, and he didn't know.

Dr. Henderson was completely patient with his patients. Kind and gentle and compassionate. On my first appointment, he read all the answers I'd given to the allergy/health symptom questionnaire new patients filled out - and he said it was the most extensive reply he'd ever read. He knew it meant life could be very hard. He asked what he could do to help me. He said when a constant *total allergy* condition got that severe, what he could do - short of long term high-dose steroids, which I refused - was limited, but he would do whatever he could.

He gave me some of the best practical advice on allergen avoidance I've ever heard. Like how to read newspapers (printer's ink and paper allergies): your friend or spouse could open them up and spread them all out in an unused area, or a covered porch, and if you aired them for a day or two you could finally read them, all by yourself, even without a mask and gloves.

Sometimes, in the background, we could hear him hollering at one of the other docs on his staff. He did, apparently, have a temper. But judging from what I overheard, the only thing that set it off was if a staff doc did something wrong with a patient: missed a symptom, acted dismissive or unhelpful, did something not quite competent enough.

Dr. Henderson took the time to help me with my Social Security Disability application. That involves a fair amount of unpaid work on the doctor's part, but he never made me feel like I was wasting his time, or the time of his office staff. Quite the opposite - he was eager to help. That application was one of the most emotionally distressful things I've ever done in my life. His attitude made a huge difference to me; he helped me be strong.

Unfortunately, he was in poor health himself, and getting ready to retire. His patients would be turned over to his associates for treatment; some to existing docs on staff, but most to another young doc, newly hired. Toward the end, Dr. Henderson still came to the office sometimes to see a couple of his favorite patients, ones who didn't want to leave his care. I was one of them.

But, finally, he had to go. I was assigned to the new guy. Dr. Neil G.

The identical first name was foolishly comforting to me.

The way things came to pass, I had all of one or two appointments with that doc. I hung on by my fingernails to get my meds refilled.

The waiting room was down a long hall from his office, where he sat behind an imposing wooden desk to meet with patients.

In the distant waiting room, with two patients ahead of me and a few after me, we sat and talked about our beloved Dr. Henderson and wondered what the new guy was like. An elderly lady got up to take her turn with him.

A few minutes later, we listened with surprise as we suddenly heard his voice. It had to be raised pretty loud for us to hear him so far away.

He was yelling at the patient.

She was another one who loved Dr. Henderson like I did, and who found great relief following Dr. Henderson's treatment plan.

Dr. Neil G was screaming at her: --I don't CARE what Dr. Henderson did! You're MY patient now and you're going to do what *I* say!!!

She finally came down the hall to the waiting room and left without making eye contact or saying a word to any of us. There were tears running down her wrinkled old face.

Another elderly lady went in. He yelled at her, too, the same way.

Then it was my turn.

I'd figured out it was pretty important not to breathe a word about Dr. Henderson. Or to argue or disagree with anything this guy said. I just needed some prescription refills to keep me going until I could find another allergist.

As we went over my file, I noticed he tended to jump around a lot. He'd ask me a question, then not wait for the answer. He'd be talking about dealing with asthma, then interrupt his own self and bounce to discussing food allergies.

He disrespected and dismissed most of what I was doing. Without even reading them, he pooh-poohed years of diagnoses and thousands of test results; he said most food allergy tests were false positives. He was talking about skin tests; I mentioned I had RAST tests done too, which he carefully pretended not to hear. (whups, no no, quiet, k! now is not the time) He asked what my food allergy symptoms were, but again, never heard the answer, and actually got impatient with me when I tried to continue answering him, telling him what happened when I ate something I'm allergic to. I shut up, and quick.

I mentally filed away what I'd change about my treatment after his Words of Wisdom. Absolutely nothing. But I smiled and pretended to respect him.

He started puffing up with manly pride. Excellent. Okay, almost out of there in one piece...

He showed me how to use a steroid inhaler without getting the Very Dangerous Stuff!!! in one's mouth, by using a plastic chamber. Such a fascinating invention! I'd never seen one before, that's a great idea! Oh, you can give me one for free?!? Thank you so much. (For a person with miniature hands, jaw, and mouth, it was way too big and cumbersome to use, but he didn't need to know that.)

I was almost done and out of there safely. Please understand, I only undertake these deceptive tactics in dire situations. Needing my meds, and not knowing where else to go yet, made this an emergency.

He asked what meds I was on, and I told him. I emphasized that my first approach to treatment was the best - and the standard - one: allergen avoidance. For example, since pollen is a chief culprit, I use a lot of air-cleaning techniques; and when it gets too bad, I stay inside in my filtered air until the pollen count goes back down. That's not easy for me, since I'm an outdoors person who loves both to garden and to travel around, but when I'm that allergic I don't have much interest in being outdoors anyway. Just opening the front door feels like getting punched in the face, and breathing polleny air feels like I'm breathing chloroform. Knocks me down and puts me to sleep.

Then...then, Dr. Neil G asked me a certain question. A perfectly human one, but a silly one coming from a doctor, when you think about it. I get asked this pretty often and I have a standard response to it, dictated by my odd sense of humor. So far, in replying to that question, it had made every single listener smile along with me.

The question is this: --So how'd you get to be this way, anyway? How'd you get this extreme totally allergy syndrome?

I answer: --You know those aliens from outer space, the ones that come down and steal your body and do these medical experiments on you? Then when they bring you back, you're never the same. I think when you borrow something, you should bring it back in as good a shape as you borrowed it in. Or better. But them? No. Nothing works quite right any more. I'm not even sure it's the original model. Either they broke the bits they were messing around with, and didn't fix them right, or maybe they just substituted a bad copy of it. I mean, the old version was small and very strong and worked pretty good. Certainly, this isn't like the original at all.--

He became very nervous, shuffled papers around on his desk, said --Okay, I think we covered everything, goodbye...

I went home. The next day I got an odd call from my primary's office. THAT doc had THE best staff, bar none. Very hardworking, efficient, knew their stuff. Got referrals done fast, solved difficult insurance issues in two minutes flat, and were friendly helpful down-to-earth people.

Beth called and said she got this weird message from that new allergist. She'd heard strange things about him from other patients too. Was there something wrong with that guy?

--Well, yeah. But why do you ask?

--Because he faxed us this letter saying you were a head case, you need psychiatric evaluation immediately, you might be delusional and were agoraphobic.

WHAT?!? Delusional? Me, who loves reality? AGORAPHOBIC??? Me, who has trouble staying inside and not traveling around, even when I really should stay in? I mean, certainly I have my issues, but I'm the textbook opposite of agoraphobic! The last thing I am is someone who's afraid to leave the house!

Luckily, Beth knows me pretty well. She said, --Well, that's what I thought too. You had an appointment with him yesterday, right? What the hell happened?

--Oh. (dead silence) Uh, you know that little joke I tell about how the aliens from outer space came and took me away for medical experiments, and brought me back all Out of Order? And that's why I'm so sick?

--Yeeeeesssssss...

--Well...maybe Dr. Neil G doesn't have much of a sense of humor?

--(dead silence) k. You told that one to someone you'd never met before?

--Uh, yeah.

--Okay, mystery solved. Don't worry, I'll shitcan the letter. Guy's a weirdo anyway. You know something? I'm going to stop referring patients to him. This is the last straw, you know? He's got a problem, I don't want to send anyone else there.

But do me a favor? Don't go telling that story to people you don't know, okay?

--Okay. Thanks, Beth.

--De nada, bye.

Dodged a bullet.

But just think: What if he'd sent that letter to some other doc, someone who didn't know me? I can't imagine how awful that would have been. It could've messed up my medical care for years. Destroyed my reputation.

All because a doc with obvious emotional problems decided to make a diagnosis outside his field, based on a few minutes' conversation, half of it in jest. No way did he know anything of substance about psychology, or he never would have said that about the agoraphobia. And why react that way in the first place to a standard practice among severe allergics? Surely I wasn't the first patient who'd had to resort to staying inside when the pollen's bad. Hell, I have handfuls of pamphlets from the AAAI and CDC and others, advising us to do exactly that.

Wow. The more I thought about the implications of what he'd just done, the more my blood ran cold.

My primary's office agreed to refill my allergy meds until I found a new doc. I was determined never to see this whacko again. And not long after, I saw him on the local TV news, being interviewed about some medical issue. Something else he was all scornful about, though I can't remember exactly what. He was working somewhere else, at an outfit in Coral Springs that's locally famous for misdiagnosing kids with meningitis, telling them it's just the flu, go home, buck up, take some tylenol and sleep it off - and next day, the kid dies.

I guess Dr. Neil G didn't last at Dr. Henderson's. So much for screaming at innocent little old ladies, making them cry for the sin of loving and trusting Dr. Henderson. The jackass landed up where he belonged: an incompetent place that got all dismissive with patients' illnesses, and let children die rather than *bothering* to listen and respect and test and think and do their job.

Fast forward to the present. It's the end of 2007, and I'm on a search for a doc who will do IgG booster treatments, and the insurance will only pay for it if it's done by an allergist/immunologist.

Unfortunately, few local docs will even do IgG boosters. One is the same Dr. C I saw in 1993 and had to leave. I tried another one around Thanksgiving, and he objected because my idiot primary sent an incomplete referral - meaning he'd not get paid! - and no file copy, no history of my condition, not even a copy of the test showing the low IgG. His staff was so terrified of my MRSA they went ahead of me opening doorknobs with paper towels. They never returned my insurance card and driver's license, probably scared to touch them. That one just didn't work out.

I had one last doc on my insurance list that I could try. The practice was a large one, the docs looked qualified, nice website. And I recognized some of the names.

I called. They said who their best IgG doc was, and we made an appointment with him for Christmas Eve day.

Huh. His name sounded a little familiar, although I wasn't sure what from - one way or another, I've heard many local doctor's names by now.

On appointment day, scootering in, the office staff were very good. I met the doc, and despite informing them in advance about the CA MRSA, I had to explain I don't shake hands any more, and why. He looked familiar. Odd. I have a very poor memory for both faces and names.

I told him about the low IgG, and he started reading my medical history, this paper I carry around and hand out to my docs. It has all my medical info, history, list of meds, list of other docs, insurance info, all that.

Instead of talking about the IgG, he immediately got on my case about food allergies. Those skin tests are often false positives, what were my symptoms? Well, I do have positive RAST tests too; anyway, here's what happens when I eat an allergenic food...Immediately interrupting my answer, he asked about my last allergist. She's a triple board-certified scientist down at Jackson, and also works with CFIDS, which I'm quite sure I do NOT have. But as I told this guy, I put *CFIDS* by her name on my med history list, simply because she works on it. Same way I put down *MD* or *DO.*

He began to dispute CFIDS, and I tried politely to explain I saw her for allergies not CFIDS; she'd tested me for CFIDS under some experimental program but we both thought I didn't have it.

He said, --Oh, she's an allergist now? --Uh, board certified, yes, if I remember right.

--Oh, so she finally got certified then? I didn't know that. (snark snark)

If you want me as a patient, folks, cutting down my other docs is not a good approach. I may well respect them, and for good reason. Most docs reading my doctor list are blown away at the extremely high quality of my medical care. It took me years and years to build that list up with really good docs. I fire the jerks and replace them with someone good, but that takes time.

Now, *I* can run a doc down to another one. That's different. It's my prerogative as a consumer. And I only do it if I have a really bad experience with a doc, when they do something they clearly shouldn't.

--So what other allergists have you seen?

--Oh, way back in 1993, Dr. C. She had a little issue with my husband for some reason, she'd make fun of him and put him down. Not a good idea. Call him Walter the Superhusband, all sarcastic because he'd come to appointments with me and be supportive. I think she was having marital issues at the time. So it just didn't work out with her. Then I saw Dr. Henderson, before he retired.

--Up in Boca?

--Yes, you knew him? I loved that doc. I wonder how he's doing.

--He died a few years ago. (Very curt and matter of fact.)

--Oh, no! I'm so sorry! I am really sorry to hear that, he was a wonderful man. He truly helped me when I thought there was not much that could be done for me any more. Did you know him?

(no response, head down shuffling my papers and muttering to himself)

Dr. Neil G's back on my allergy treatment: --Okay, we need to work on this and that and...

I told him, --Look. I do need a current allergist, and I will get to it. But right now, my one and only concern is to get this IgG treatment going. I'm immunocompromised while I carry three bad germs, including CA MRSA. That's really dangerous. I'm getting all these odd respiratory infections too, landed in the hospital for three days last year with one. So if we can attend to the IgG first, then I can move on to thinking about my allergy regimen afterwards, okay?

--Okay.

--I really want this IgG treatment. I really think it could do me a lot of good.

--Okay, well I can't run around ordering IgG treatments just because some patient comes in here and tells me what to do, okay? First, do no harm.

Warning bells warning bells! I shut up. Quick. I remembered what happened 14 years ago when I spoke openly with an asshole control-freak allergist. I'm here to get the IgG shots, don't blow it.

The doc explained this: IgG is a human product, not artificial, so even though it's much cleaner than other blood products, there's always a risk of infection. Considering that, if someone's IgG is still in the 500's, they usually don't do boosters. The exception is, if we test their immune response and they aren't making good antibodies. Otherwise, we only do boosters if they're in the 300's or maybe the 400's. We'll keep testing every year or so, and when it gets that low, we can just go ahead and do the treatment.

I am so disappointed. So badly disappointed. I can taste the bitterness of denial in my mouth, like a little kid who opened the very last birthday present and suddenly realized that the only thing they actually wanted, they didn't get.

--Well, how does that antibody test work?

--We take a bunch of titers - that measures your antibody count. Then we give a couple of vaccinations - for you, tetanus and pneumococcus - and run the titers again. If the antibody count goes up in response to the vaccinations, then we know your immune system is at least producing those antibodies, which is good. If not, then we can administer the IgG shots. See, first, do no harm, right?

I've paraphrased what he said, because he didn't present it in such an orderly fashion at all. Jumped around, kept messing with papers, looking at them, shuffling them around instead of paying attention to the topic at hand. He'd repeated *first, do no harm* several times. He talked about *FDA protocols* and *standard medical approach* several times too.

Based on my own personal experience - which includes some close familiarity with lawsuits in conjunction with my old profession - he was talking like someone who'd been sued. Someone who'd been lectured hard on how to talk, both by his own lawyers, and his bosses.

Hmmm. Not good.

The whole thing was making me uneasy. Something was nagging at my mind. Why did this guy seem familiar to me? Me, who can't remember names or faces very well?

We set up the first round of blood tests. I got in and out of Quest the same day, and fast, because there weren't many patients lined up on Christmas Eve day.

Dr. Neil G wanted me to call back in a couple weeks, once my blood tests were back. Hmmm. Seemed a little backward; the test results go to them, shouldn't they call me to let me know they were ready for Step 2? Whatever. I'd call.

But this guy kept nagging at me. Suddenly I couldn't rest until I found out who he really was.

After calling the insurance company and consulting the phone book, then examining his practice's web site, I knew the answer. It was the very same Dr. Neil G who made the old lady cry, the one who took over from Dr. Henderson.

SHIT. I HATE that man. You don't scream at old ladies and make them cry and expect me to have any respect or liking for you EVER, I don't care WHO you are.

Go back to that creep? NO. WAY.

I told Walter who he was. He said --NO. WAY. You should have reported him back then. Remember what he did to you? He could have really hurt you with that letter.

--True. Don't worry, I have no intention of returning. I can't. I know full well by now that it would only hurt my medical care, going to someone like that. I finally learned.

Soon I saw my ID doc, the good Dr. C. I told her about the creep, explained about him screaming at the little old lady. Dr C was startled. I said I couldn't continue to see a doc like that, it wasn't worth it. He was the last one on my plan, but I'd figure something out.

I also told her how he said FDA protocols meant I couldn't have boosters until my IgG dropped really really low, unless these sensitivity tests showed substandard antibody production. She said, --No. That's not correct, the FDA doesn't say that. There is some caution, but only because in the past this was abused, overused by doctors.

--OH! So maybe it's protocol for me to get them after all?

--Perhaps. We'll see. You must find an IgG doctor, we will go from there.

This is what happens when you visit a doc who makes decisions based on emotion rather than logic. In this case, his relevant emotions are fear and control. Anyone who uses emotion, instead of fact, to come to *reasoned* conclusions will go astray. Think with your head, feel with your heart; they each will inform the other, but make sure you know which one is really doing the job at hand. Make sure it's the right job too: the heart for feelings, the head for logical conclusions and decision-making.

Say a doc is a jerk in other ways, like screaming illogically at innocent patients, dissing your other docs, jumping around in a disorganized fashion about your medical issues, talking about issues that are not on the table, being dismissive of medical diagnoses made by other docs; thinking that a patient who wants IgG treatment, who was specifically referred for IgG evaluation by four other superb docs, is *telling him what to do,* displaying excessive concern about *first do no harm* and *follow protocols* - Say a doc is displaying all these questionable actions and statements.

Your care, in his hands, might not be the very best care. It might be compromised, because his emotional problems are overriding his logical judgement. Your own logical judgement should tell you that, even though emotionally you may want to trust him, because he is a doctor, after all, and you do need his care.

Next I saw my great pain doc, Dr. E. He's not just a Pain Management doc, but a surgical anesthesiologist. He's very well versed in general medicine, and extremely helpful with things like my MRSA issues. He's truly compassionate and not afraid to show it. I have great respect and affection for this man.

Dr. C (Infectious Disease), Dr. K (Rheumatology), Dr. S (Pulmonology) and Dr. E (Pain Management) are all quite gung-ho about the IgG. Just like me.

I told Dr. E about the asshole. I told him about it being a risky human product, too.

He said, --Wow. Unfortunately there are some nasty people in my profession. Control freaks and medicine, sometimes they go together. As for the risk? The risk to you of infection because your IgG is low is far greater than the risk of catching something from the IgG shot itself.

Ah! See what I mean? Smart doc. And note this: Dr. Neil G never considered the infection risk in that light.

I told Dr. E I couldn't go back to Dr. Neil G.

He said, --Hold on. You can't change people like that. They're like teenagers.

--Hmmm...You have kids, right? are they teenagers now? (grin)

--Oh yes! he laughed. --They're TERRIBLE.

--But listen: You don't have to see him for allergies or anything else. If he's the only IgG doc left on your insurance, just see him for that. Go through the sensitivity tests, maybe you'll qualify and get your boosters. You only have to look at his face a few times.

--(quiet...thinking...) Okay. I will. Crap. I hope he hasn't figured out who I am. That could be a real problem.

--Yeah-- he grins. --We'll see.

It was Dr. E asking me to go back to the creep, and for a logical reason. I'd do just about anything Dr. E asked me to. So. I decided I'd bite my lip and go back.

That took place on my late December appointment. I see Dr. E, by law, every 30 days. Last Thursday, January 24, was my next visit. For *busy work* during waiting times, I'd brought a stack of unopened mail. I got partway through it before I saw Dr. E.

Getting into the car to leave, I finished the stack...wherein I found a letter from Dr. Neil G.

?!?

Here, I'll reproduce it:

January 4, 2008

[k... name and address both misspelled]

Dear [k],

We regret to inform you that [...] Associates of Florida hereby terminates any doctor-patient relationship with you. We will provide you emergency medical care within our specialty for the next thirty (30) days to allow you to establish a relationship with another allergist or related specialist. We will also provide records, physician notes and test results to the physician of your choice upon your written request.

Please direct any request for those records directly to me at the Kendall office. Thank you.

Sincerely,

[...]
Administrator

So. I guess the jackass figured out who I was after all.

4 comments:

Morris said...

Yeah, I guess he did.

Asshole doctors like that are what happens when they believe they are the high priests of medicine.

pepektheassassin said...

Jackass.

Granny J said...

That is an incredible medical saga, k.

k said...

morris and pepek, yes, yes, and yes! Q: What's the difference between God and a surgeon?

A: God doesn't think he's a surgeon.

Lucky for me, the good ones are out there too. It's just winnowing out the creeps that can set me back for a bit.

granny j, I never know how these things will look to others. It's been my life for so long now, it's all just...almost ordinary to me.