Thursday, April 30, 2009

Old-People Problems

I apologize in advance for what I fear will be a lethally boring, dry, and humorless post--and I will take no offense should it go unread--but I'm subjecting my readers to it for a reason. I hope.

Last night, for hours and hours and hours, the elderly woman in the room next-door was screaming and wailing and fighting with her heavily accented African attendant--called a "care partner" at UCLA. The voyeuristic cannibalistic (and lazy) writer in me couldn't avoid eavesdropping, even though it very quickly became evident that the drama was uninteresting and incredibly repetitive, if deeply sad. Still, I transcribed the chunks of it I could decipher. I rarely heard what the staff said, in their forceful calming tones, but most of the old woman's words were clear, shouted through snarled, twiny vocal chords.

I know nothing about this woman. Strangely, I do know her name (which I won't use, of course), but I don't know what she looks like, what her cardiac condition is, or how old she is. I wouldn't recognize her if she walked into my room now. Unless she started shouting at me, which she probably would.

In trying to keep up with the muffled, painful exchanges, I realized that she was demented (and the nurses said as much--in the hours-long struggle, numerous attendants, nurses, and social workers were alternately recruited to mitigate and molify; and there were frequent discussions of Haldol, a powerful anti-psychotic, though I couldn't gauge whether any had been administered). There was nothing remotely interesting about the content of what was said: it turned out she was belligerant about not being allowed out of bed without assistance, and about the attendant's attempt to change her diaper. But the overall effect was pretty terrifying. I wondered if it was a dismebodied, auditory augur of my future: alone in a hospital room, angry and scared. Given my health at 32, what eventual alternative could there be for me?

Then this afternoon my friend Jamie stopped by with her 19-month-old daughter (and a Coffee Bean iced coffee, bless her heart), and we walked down to the hospital cafeteria for lunch. Jamie noted that what's interesting about my medical issues, and my consequent perspective on things, is that I've "got old-people problems." I suppose this is undeniable. Yes, I was born with congenital heart disease, and, due to medical advancements in the last half century, only now for the first time is there a generation Tetralogy of Fallot sufferers who have lived into middle-age. Something about my condition feels intrinsically childish. But pacemakers in general do sound like old-people problems (and there will be more to come on my struggles to get a young-people pacemaker). Long considered comic-relief by ad men, it turns out old people (a) have their own problems; and (b) were previously non-old people. So in that light I thought I'd post the partial transcript of last night's ruckus next-door.

Be warned, it's boring and repetitive--in content. Getting past that, though, I hope it takes on the formal abstraction of a prose poem. That somehow Gertrude Stein would be proud of this woman's creation, albeit unintentional.
Gertrude Stein. I'd like to squeeze those Tender Buttons, baby!

And I don't know anything about spoken-word poetry, but I imagine that this poor woman's paroxysmic protestations were both performative--in some self-pitying, addled, acting-out way--and genuine performance. The theatrics of suffering, or some such banality. It's disjointed and apparently meaningless, but with any luck that makes it all the more revealing.

David Milch, a writer I greatly admire and have been fortunate enough to briefly study with, says that, in "Moby-Dick," Melville subjects readers to the obsessive, overwhelming, and boring chapters about the whaling industry so that, in some sense, they will ultimately share Ahab's fixation and frustration. That, in some metonymic parallel, the reader's relationship to the novel will reflect Ahab's to the whale. To, as Coleridge puts it, transform the novel (and Ahab's quest) from a fanciful association to an imaginative one. Maybe my invisible old lady's words can transform the fanciful association of old age that we all possess into something slightly more imaginative and genuine...

OLD LADY: ...Let go of my hand! Let go of me. Let go of my hand. Let go of my hand. Let go of me! Let go of my hand, I said! Didn't you hear me?!

ATTENDANT: I'm not doing anything.

OL: Yes you are , you're being bad to me. I want you to call my husband. Right now. Right now. Right now. I want you to leave me alone, and stay away from me.

A: I don't want you to fall.

OL: I'm not going to fall.

A: Where do you want to go?

OL: I don't know where I want to go! I don't want to stay here with you. I don't want to stay here with you! I don't want you to touch me. I want you to get your hands off of me! Get your hands off of me. Get your hands off of me. I want her to get her hands off me! I'm sick and tired. I'm sick and tired.

NURSE 1: Just relax, close your eyes.

OL: I will not close my eyes. [many minutes later] Let go of me. Let go of me. Right now. Right now. Do you hear me? Right now. God damn it! Leave my hand alone. Leave me alone. I don't want you to touch me. Get away from me! Get away from me!...No, get away from me! Owwww! You bitch! [sobbing] Get out of here. Let go of me. Stay away from me! [several other nurses enter room] I want her away from me….No I don't want you to touch me.

NURSE 2: We just don't want you to fall out of bed. What's the problem?

OL: I want her to get her hands off me.

N2: Well she will if you get out of bed.

OL: I can get out of bed. [inaudible exchange] They're going to hear about this, don't worry!

N2: Okay, let's pull you up.

N1: We're gonna pull you up in bed.

OL: Leave me alone! Wait till I tell my husband.

A: You want me to call him?

OL: I don't care if you call him or not, I'm gonna tell him plenty.

N1: Okay, pick your legs up.

OL:Let go of me.

N2: We just want to make sure you're safe. Let's just relax, 'cause you're getting all wound up for no reason.

[many minutes later]

A: What did I do on your hand?

OL: You broke it!

A: I broke it?

N2: Are you cold or hot?...Okay…

OL: I don't want to be handled. Let go of my fingers. Let go of my hands. Now! Now. Get away from me. Get away from me! Don't push me now, I'm gonna call the police. Let go of my fingers now. Do you hear me? Now.

A [walking out to nurses' station]: Excuse me, Nurse, you don't have anything to calm her down?

NURSE 3: She called the husband and he didn't want her to get anything.


OL: Get your hands off me!

A: Okay, stay in bed.

OL: Don't you dare hit me.

A: I'm not hitting you.

OL: Yes you are!

A: I'm not hitting you.

OL: Yes you are!

A: You're hitting me.

OL: I don't care!

A: Okay, stay in bed, I don't want you to fall.

OL: Get away from me. Let go! Let go-oh.

A: Stop hitting me, it's hurting me. You're hurting my hand.

OL: Let me be.

A [returning to nurses' station]: Can you call the charge nurse for me? I need to talk to her.


OL: I'm not bothering you, leave me alone!

A: I don't want you to fall.

OL: I won't fall.

A: Let me change you.

OL: No!

A: You're wet, you smell.

OL: I'm not wet!

A: Yes, you are.

OL: Too bad!

A: You stink.

A [conferring at nurses' station]: She says she's gonna make sure I lose my job. She's hitting me. I need my job, so if you guys--if they don't give anything for her, I have to leave. Still they don't want to give her anything.

N3: Yeah, I'm going to talk to the charge nurse and Ill be back. [later, on phone] I don't know if you want to talk with the husband about what to give her, because I don't... [inaudible].


A: Don't pull this IV, you're going to hurt yourself.

OL: Leave me alone! Leave. Me. Alone.

A: If the patient were hitting and scratching, I'd expect some kind of intervention. She needs some kind of medication. Something….She can't strike out of the staff. This has been going on for 2 or 3 hours…the husband can’t… [inaudible].


NURSE 4: My name is [Nurse 4], I'm the charge nurse for the night shift. I'm just checking on you. You met [Nurse 1] here and [Attendant], right? [later, at nurses' station] Okay, so the doctor called, they're gonna let her get some Haldol. But you know how it is, as soon as she falls asleep…


A: Lay down.

OL: You are a pain in the ass.

A: You see when I'm touching you? When you try to get up from bed.

OL: Get your hands off me!

A: I will leave you alone when you stay in bed. Why are you hitting me?

OL: Because you annoy me....Will you stop it? Damn you! Get out of here, just get out of here!

A: Why are you screaming? People are sleeping.

OL: Don't you dare, damn you. Get off of me! You're gonna be sorry. Boy, are you going to be sorry. You are going to be sorry.

N4: Mrs. [Old Lady], settle down. We're just gonna clean you, and after that, were not gonna touch you.

OL: I don't want you to clean me, I can clean myself. Leave me alone, I said. Let go of my hand. Get off of me! I don't want you to clean me, I want to clean myself up.

A: You can't.

OL: Yes, I can. You're making me very angry....Stop pulling on me.

N4: Mrs. [Old Lady], we're helping you.

OL: You're not helping me. Will you stop it, you're hurting me! Bastards.

N4: That's not appropriate.

OL: I don't care! I don't like what she's doing to me....Leave me alone, you pig! You will close your mouth. Leave me alone, you pig....

Tuesday, April 28, 2009

Even if You're Not a Christian

The Latin word for "health" and "salvation" is the same. So, when in UCLA, do as the Bruins do. It occurred to me, as I lay in a feverish delirium in the ER that first night, that the hospital call button is a lot like prayer: it's a comforting notion; there's some omnipotent, disembodied voice you're communicating with; and you can ask for whatever you want.

But, you ain't gonna get it.

I like to consider myself both pretty self-reliant and short-tempered. Normally, if hospital staff don't give me something I've requested, I go get it myself. (Thus my mini-desertions of the cardiac floor. I do have "patio privileges," but if there's no one around to grant me express permission, I've been known to wander off without the proverbial hall pass.) But when hooked up to wall-mounted machines, I'm a little more dependent than I'd like.

So during my initial day and a half in the ER, I often needed the call button. My calls were inevitably answered by a surly aide, or occasionally a surly nurse. "Yes, can I help you?" "Yeah, my telemetry alarm keeps buzzing." "I'll send your nurse in." Click. And then, as if by magic, a nurse would not appear.
A magician performs the classic trick of making a nurse not appear. But what does appear--also presumably via magic--is one nifty ponytail!

Eventually I reached up and turned off the monitor. Hours later a nurse came in and asked who'd turned it off. "I did," I said. "The buzzing was driving me crazy." "Don't do that. Use the call button," she snapped. Why hadn't I thought of that?

Because of the fevers and rigors, I had the chills. Several times I used the call button to ask for more blankets. "Absolutely," said the Mystical Medical Deity from Beyond. Suffice it so say, my multiple implorations went unanswered, and I shivered and sweated through the night. Hospital staff are apparently unfamiliar with the common usage of the word "absolutely." And maybe I don't use proper prayer technique.
Note how brunettes can right their errant ways. Blonds' souls are simply too weighed down by the evil that festers in their shriveled black hearts. It's a doctrinal mystery that has baffled theologians since Thomas Aquinas's Summa Capillus ("Highest Hair").

This is not the first time in my life that medicine and theology have collided like so many evil embryonic stem cells.

In January, 1987, I had my second open-heart surgery at Boston Children's Hospital. Oh, in Boston? Yes, in Boston. Memories of the 8 days I spent there have, of course, grown hazier and less accessible over time. But one moment persists: my father and I were in the floor's little playroom with another young patient's mother. In my recollection, her child wasn't there, though in retrospect this doesn't make much sense. Or perhaps like many parents in children's hospitals, she just needed some adult contact--not in the form of a doctor or nurse. Or she needed the fleeting reprieve from fear and anxiety about her own sick child granted by the presence of another one and his parent.

And I don't cavalierly wax poetic here--this woman was clearly embroiled in a significant spiritual moment. She looked at me, genuinely lovingly, and declared to my father, "He looks like the young Jesus."
Gerrit van Honthorst, "The Young Jesus." Oil on canvas, 1620. Note the infinite patience with which young Jesus regards his bumbling-carpenter father, Joseph, who yet again has to work all night to finish a job. Young Jesus looks tolerant, but he's thinking, "Really, Dad? Again?"

I was a little freaked out, my father probably more so, but my naive little mind understood that her utterance was somehow a compliment--and possibly even a compulsion. (Much the way a young Jesus likely would've understood, I might add.) She saw something divine in me. Maybe it was the light. Maybe it was my soft, angelic look. Maybe it was the Playmobil nativity set I was playing with.
Whatever it was, I know it was a willful, if subconscious, delusion. She saw in me what she needed to. I imagine whatever that was, it was something she could not bear to see in her own child. In proclaiming me Jesus 2.0, she miraculously cured me by endowing me with some sort of everlasting life. But as I get older and approach the age at which Jesus was crucified (and at which many comedians die--John Belushi, Bill Hicks, Chris Farley, Freddy Prinze), I wonder if there's a little more to that revelation. Perhaps if I assumed the role of Jesus, I would die and her child would live. Of course I don't believe she felt this consciously, though sometimes I still wonder why she kept putting ground glass in my jello.

Yet none of this can hold a holy candle to what happened at UCLA a few nights ago. The night nurse (an androgynous Southeast Asian whose English was far from great) came into my room to give me my nightly meds. She told me that "most open-heart surgery [sic--she meant patients who'd had surgery] are angry," and she made a frowny face in demonstration. "But not you," she continued. "You have nice face and nice body. You have beautiful skin and nice face. You can think about good stuff, or think about bad stuff." In all humility, I have been told I look like Josh Charles.
"S.W.A.T." (2003), starring Josh Charles (not shown). Follow the link for a picture of Mr. Charles.

Then she busted out the medical jargon, explaining the most important thing for open-heart surgery [sic] is to avoid cold, flu, and stress. I said, "Yeah, well it's kind of hard to avoid stress." She conceded that it was, with a burst of nervous laughter, but offered, "If that doesn't work. Pray to God." (I really want to avoid offensive caricatures here, but I need to try to phonetically spell the way she pronounced God: "gawrd." Even that doesn't really do it justice.)

"He'll help you," she continued. "Yeah, pray to God." I was probably too shocked to display emotions of any kind, but maybe she sensed she'd strayed into uncertain waters. "Even if you're not a Christian, pray to God. He'll fix you."
A sick child prays to God. Note the dog's incorrect praying position. Yeah, Rex wants us to believe he's praying, but I suspect he's sodomizing the bed--just look at his face! Let's hope Timmy is praying for Rex's dirty, shameful, dirty soul. Evidently, "No Dogs Go to Heaven!"

While I'm sure her faith in God's healing powers was sincere, this prescription hardly constituted a ringing endorsement of the cardiologists and infectious disease doctors whom I needed to "fix" me. Amazingly, she wasn't done: "Also, 'The Secret.' Go downstairs the gift shop, they have it. Book or CD. It's good!"
Shhh, it's a secret.

Needless to say, I ran right down to the gift shop and bought both the book and the audio-book. I plan to listen to it while reading it, in case the glare of its truth blinds me. Oh, crap, I just realized--what if the explosion of its insight also deafens me? Well, as the nurse said, "You can think about good stuff, or think about bad stuff." I will harness the power of "The Secret" and choose to think about good stuff: that "The Secret" will merely blind me. Frankly, I can only assume that is what will happen. And if so, dear readers, you'll forgive an abrupt end to Beneath the Gown.

What I loved most about the nurse's sermon, though, was, "Even if you're not a Christian, pray to [the Christian] God." The simultaneous awareness that I might not be a Christian coupled with the zealous insistence that I worship her God--worse, beg Him to heal me--deeply troubled me. Luckily I snuck out of the cardiac wing, went to the pediatrics playroom, and stole my new favorite toy.
Note the massive grin on the surgical patient's face. Someone's got a morphine drip! And if you think an operating room called "System X" makes a disturbing child's toy, come Christmas you should really steer clear of the Playmobil play set "Mr. Mengele's Dungeon of Doom."

Perhaps these tiny plastic doctors can perform a Jesusectomy. Let's pray to God they can.

Monday, April 27, 2009

Prologue: the Beginning

Welcome to Beneath the Gown, a chillingly honest portrayal of the life of a hospital patient. AMA, lock up your daughters, 'cause the gown is coming off.

I am a 32-year-old man born with Tetralogy of Fallot, a rare series of congenital birth defects in the heart. Tetralogy of Fallot affects roughly 5 babies in 10,000, who typically experience a failure to thrive and are referred to as "blue babies." I was fortunately anomalous and did not experience failure to thrive, nor was I a blue baby. I was squatting a lot, however--a sign of fatigue in toddlers--and at 22 months had my first open-heart surgery. This was the beginning of my lifelong odyssey through the world of a chronic patient.

Needless to say, as I've grown, my relationship to my health, my doctors, and my health insurance "providers" has evolved and transformed and, at times, devolved into blind murderous rage. For instance, on the day Blue Cross of California settled the lawsuit brought against it by the state in 2008, it also refused to pay for a biventricular pacemaker for me (a pacemaker with a built-in back-up wire so I won't, y'know, die). Somewhere an insurance company medical reviewer just got his wings.
An insurance company medical reviewer gets his wings by denying a sick woman necessary medical treatment. Raping her is optional, but it can only help him achieve his dream of one day becoming medical director.

On Thursday, April 23, 2009, I was admitted to the UCLA Medical Center--now officially known as the Ronald Reagan Medical Center, presumably a nod to the $150 million in private donations raised in the "Bedtime for Bonzo" star's name. Other forces of evil whose names grace the engraved and illuminated glass plaque in the lobby of the Nancy Reagan Tower are: News Corp., the Walt Disney Company, and Diane von Furstenberg. So the new name is either in honor of the Gipper, or it's a long-overdue concession to UCLA's shameful history of selling weapons to Iran. Don't believe me? Take a look at this picture from the June 4, 2007, dedication.

First of all, what are those two stubby little things poking out of Nancy Reagan's bright orange missile silo, if not Lockheed Martin Hellfires? But that's not even the worst part. The funny little guy with the Governator is not who he appears to be. Say hello to Mayor Antonio...Ahmadinejad! Yes, yes, he's quite deceptive sporting the clean-shaven look, but the evidence is as undeniable as the fact that there are no homosexuals in Iran.
Fig. 1, "In Iran we don't have homosexuals like in your country."

Fig. 2, "In Iran we don't have homosexuals like in your country." Note the cunning absence of the beard, Iranian flag, and crescent-and-star symbol.

Scariest of all, however, is this meeting of the minds.
What an unholy dyad: one is an unstoppable robot assassin from the future hellbent on destroying humanity, and the other is Arnold Schwarzenegger! But enough about movie stars and widows of movie stars. This blog is about me and my ongoing stay in the hospital. But don't worry, I am at UCLA, so you can rest assured there will be plenty of movie stars making a cameo or two! As long as you count Britney Spears as a movie star, we'll get along just fine.

After suffering almost a year of cyclical protracted periods of fevers (culminating in a 105 fever and loss of consciousness on the morning of the 23rd), I was emergently admitted with a presumed case of endocarditis, an infection on my heart--likely originating from my pacemaker, which was replaced in July, 2008. With no real hospital rooms available, I spent the first 35 hours in the ER. The fevers and rigors persisted, though fortunately I now had people drawing blood every 15 minutes and giving me unnecessary, but very painful, abdominal injections of blood thinner. I was tethered to the wall behind my bed by an antibiotic IV drip and 02-sat clip on one arm and a blood-pressure cuff on the other. The ER gurneys are basically the dimensions of an ironing board, minus the plush cushioning. At 6'3" and 200 lbs. (all muscle and brain), my lying on the gurney was like a cat lying on a tongue depressor. Although much cuter, of course: they can bind my arms all they want, but nothing's going to stop this kitten from wagging his tail!
Typical kitten. Note, not a photo of the author.

Friday night I was moved to a proper room, about which I can't complain. It's private, big, and has an adult-sized bed and a flatscreen TV with cable. My friend lent me a laptop and the hospital's got free wi-fi. Which means I've got it much better here than I do at home. Plus, the endless parade of androgynous Southeast Asian nurses to excite and confuse me. I told one that my second open-heart surgery had been performed at Boston Children's Hospital, and she said, "Oh, in Boston?" You can't teach that in androgynous Southeast Asian nursing school.

Graduation ceremony at an androgynous Southeast Asian nursing school.

Friday and Saturday nights were rough, as the fevers returned and the rubber hospital mattress did little to stem the flow of sweat. While the echocardiogram and ultrasound could not visibly detect endocarditis, the blood cultures came back positive for coagulase-negative staphylococcus, bacteria typically found on the skin that are quite common and harmless...unless they enter the bloodstream. And after a thoroughly boring weekend, on Monday I had a transesophageal echocardiagram (TEE), which entails an echo camera being shoved down my throat so it can snap unobstructed pictures of my heart. Thankfully the hospital food had already dulled my gag reflex.

The TEE verified that, in fact, there is bacteria growing on my pacemaker, and possibly on my tricuspid valve. In my next post, I will discuss my doctors' gameplan for how to treat me. (See "ID, Please" above for details.) Hint: it involves wishing. And leeches!