Baby Bird Breaths, Part III

Besides being extremely challenging medically, I am also a hospital snob. I despise small-town hospitals -- I only go to them when I need a minor prescription or flu shot -- and am only comfortable in big-city, tersiary-care institutions. In addition, I prefer that the center be a teaching hospital, as I possess a fondness for residents dating back to before I even knew what ER was. It's amusing to be a unique part of their residency, although, it is not as fun when I'm admitted with pneumonia only to have med-school tourists visiting the side-show act, "A Girl and Her Iron Lung."

I also prefer male doctors. They do a better job and are often more confident. These sexist opinions, I feel, are justified, because I base them on 23 years of personal experience. Admittedly, I have encountered a few female doctors that I enjoy and trust; my current PCP is a woman. However, the ratio of positive, successful female experiences to negative fuck-ups is one in three, and usually their errors need to be corrected by men. For years, I had this doctor who always performed a specific procedure on me, and she had to call her male colleague for help almost every time. He would fix in 10 minutes what she had been working on for 50. Are the majority of female doctors equal in skill to male doctors? Probably, and much of this depends on education as well. But I still feel more comfortable about being examined by you if you have a penis.

Male doctors tend to possess the attributes I like, too -- confidence (at times giving way to arrogance), brevity, coldness. Come in, assess, diagnose correctly, treat correctly, get out; that's what I want. Like Hugh Laurie on House, M.D., but without the 45 minutes of life-threatening misdiagnoses. Sometimes I hate their opinions. When I was nine, my doctor sent me to Children's Hospital in Pittsburgh to be admitted, and I screamed at him and told him how much I hated him, even though I needed the care. Then in May 2005, after the most severe pneumonia I've ever had, Dr. Jonathan Finder forced me to start using The Emerson Cough Assist, which requires that a mask be held firmly over my mouth and nose for roughly a minute. And we all know about mask drama.

All that said, yesterday, a mere six days after having both of my wrists unsuccessfully pricked at Excela Health Latrobe Hospital, which in many ways is a fine facility for less high-maintenance patients with normal-size blood vessels, I ventured into Pittsburgh to Allegheny General Hospital for a second try at blood gases. To my great joy, I was quickly escorted to the pulmonary lab, where Mr. Freeze, so named because of his complete frigidity, seemingly effortlessly drew a syringe of blood within 30 seconds. That includes prepping the site with alcohol and answering, in single-word replies, my mother's one-sided attempts at friendly small talk.

Once he had tested the sample, Mr. Freeze admitted to initial feelings of doubt about successfully hitting the artery. I appreciate that he showed no apprehension, though. Cold and confident. Mr. Freeze, you just earned yourself spot number two on the list, right under Tamika (No. 1), who somehow drew three vials of blood from between my spidery fingers in April.

Baby Bird Breaths, Part II

The sleep study did not go as expected. First of all, I stayed the entire night -- 8:30 p.m. to 5:30 a.m. -- instead of failing and being home by midnight as I had planned. Secondly, I used the BiPAP/CPAP. Finally, I did not enjoy the new machine at all.

When we arrived at the clinic in Pittsburgh, hearing that I would be using CPAP, not sleeping sans assistance, excited me. The place was small and non-threatening, and it lacked the sterility of a hospital. In fact, my room was decorated as if it was a bedroom in somebody's home. The walls were painted a mint/light-sage green and had a floral border near the ceiling. A queen-sized mattress sat upon a country bed frame and was dressed in a garden-motif comforter, and wrought-iron lamps hung on either side of the bed. The room had a TV with satellite cable, but instead of being mounted, it sat on a nightstand at the foot of the bed.

Lauri, the respiratory therapist assigned specifically to me, brought in my choice of masks -- nasal or full-face. I tried on the nasal, as she recommended it as a "good beginners mask," and I liked it very much. It was soft and comfortable and non-invasive. Unfortunately, when we connected it to the machine and turned it on, I wasn't getting the pressure that I felt I needed. I also tend to keep my lips parted even when breathing through my nose, which the machine senses as a leak.

I decided to try the anxiety-attack-inducing full-face mask. Now, it is a lesser known fact that I do not respond well to masks, especially ones that seal around my nose and mouth. In my iron lung, my entire body may be enclosed, but my head and face is free, and inside my arms and body can move around as if I was in a bed. The collar is the only thing restricting. Masks make me feel as if I'm being suffocated, and not being able to communicate freaks me out.

This mask also needed to be pulled very tight to create a seal, but not too tight as to pinch the face and hurt the bridge of the nose. I encountered this problem around 1:30 a.m. when, in attempt to get comforable and stop the metal monitoring electrodes from digging into the back of my head, the therapist had to re-adjust the straps due to my change in position. My mother, asleep in the recliner, didn't help my situation and refused to reposition me: "You lie on your back all night every night at home. If you think I'm going to adjust you once you're in a real bed, you're mistaken." How was I to sleep when I had prongs jammed into my skull, a plastic mask anchored too tightly to my face and had to continually call for Lauri's attention because my mother was being a bitch?

By this point, I was beyond frustrated and lying in bed cursing. I was also upset because, aside from the portability of the CPAP -- although my lung has never prohibited me from going on vacations, to college or to New York -- the other reason I'd chosen to try the new device was for Dobler. He had been saying how great it would be to have something so small and easy, and while at first I refused, the thought of being able to actually sleep in the same bed with him at night persuaded me. I felt like hating this machine was a let-down to us both, and I got angrier at myself the more I longed for my iron lung.

I did fall asleep from 2 to 4:30 a.m. Lauri was in charge of the CPAP settings and increased them accordingly as I slept and as my oxygen levels decreased. At 5 a.m., she disconnected me from the electrodes and sensors. They had collected more than enough data, which will be discussed with my pulmonologist at my appointment August 21. I expressed how uncomfortable I had been during the night, and she assured me that many people who use CPAP complain at first about the discomfort.

I haven't dismissed the idea of a new ventilator, and hopefully I can try one for a month or so after meeting with my doctor. However, nothing felt quite so blissful as my bulky, inconvenient lung at 7 a.m.

Baby Bird Breaths

I’m a medical nightmare. I have been since the moment I was born a ball of dislocated hips and shoulders, and I will continue to be until these hips and shoulders finally collapse. But until that day, it seems one of my life's purposes is to torment the medical industry. I won't list examples of past experiences right now, but know that I'm a master of keeping doctors and nurses alert and humble.

Upon the request of my pulmonologist -- who was acting upon my request to perhaps retire my leaking, bulky, incredibly-comfortable-yet-a-nuisance, 12-year-old Porta-Lung in exchange for a portable BiPAP ventilator -- I went to the hospital yesterday for blood work. To be more precise, it was for blood gases, which are taken from the artery as opposed to standard blood work which is taken from the vein. Blood gases measure my levels of oxygen and carbon dioxide during the day on room air, and they also hurt like a mo-fo because arteries are deeper than veins and have more nerves. I hadn't had gases in maybe ten years, but I remembered the pain.

Taking my blood requires skill, because I have baby-bird blood vessels. Usually a self-confident, older phlebotomist brags about how "it'll only take a minute" to my preliminary warnings and inquiries of "I'm really difficult" and "Are you good at this?" only to discover that, no, there aren't any veins popping up no matter how tight you make the tourniquet; no, I can't straighten my arm so you can try my elbow; no, it will not take only a minute. Seven pricks later, either a younger fresh-out-of-phlebotomy-school woman or a 30-something man gives it a try and succeeds on their first try. I add their name to my mental list of blood takers that I like, which is far shorter than my do-not-ever-touch-me-again (you sadistic, unskilled, know-it-all bitch) list.

Yesterday, despite having both Susie (fresh, young) and Bob (40, taking his teenage daughter to the American Idol concert next weekend), the gases were unsuccessful yet, surprisingly, almost pain-free. I should have suspected the upcoming failure when Susie opened the first syringe, commented on how it was "sticking" and not working perfectly, then turned to Bob and asked, "You think we should try it anyway?" (I, sitting at the table and watching in horror, offered my opinion: "How about you use the other, unopened syringe sitting right there?") With the help of an ultrasound machine to hear my faint pulse, they did manage to hit the artery in my right wrist. My blood filled the syringe too slowly, however, clotting in the needle after less than 0.1 cc's were collected -- 0.4 were required. I left the hospital an hour later with gauze taped to the undersides of both wrists. I looked like a suicide gone awry.

Tonight marks phase two of "Rachel gets to someday sleep in a real bed," when I go for a sleep study to determine by "need" for respiratory assistance at night. Having slept in an iron lung for 12 years, requiring various portable ventilators while napping or when needing to successfully cough, and not being able to doze off for more than a few minutes unassisted, I estimate that I'll fail the lungless study within an hour -- a decade ago I did it in two. Hopefully then I can come home where my baby-bird body can rest comfortably and without the hindrance of breathing.

Electric City: Independence DaySeeing Red, Feeling Blue

We walk from our room in NYU's Weinstein Hall on University Place toward 23rd Street. There we can access FDR Drive and view the legendary Macy's Fourth of July Fireworks. The site was recommended over the additional barges around the Brooklyn Bridge and the Statue of Liberty (too many people, too far away, etc). The fireworks are set up on barges in the East River and can be seen from any point in Manhattan, Brooklyn and Queens with unobstructed views of the sky above the river.

I had been talking about seeing the fireworks for weeks now to my best friend. It's not that I love the holiday, I'd tell her. It's that I love any opportunity to attend such a spectacle. Considering that we're roommates for the summer, by July she can almost tell the story as if a member of my family. I also had recounted many times how my family has a yearly picnic and how my brother and uncle present an illegal fireworks show. They wear matching, personalized shirts that read "Belly Brothers' Fireworks" that my other uncle had made at the printing company where he works. I associate the Fourth with family and fun, but this year was going to present grander memories.

We have been planning to go together for weeks now. Her favorite parts of the Fourth are the barbeques and watermelons, so on our way we're supposed to stop and buy street-vendor hotdogs with yellow mustard and other picnic goodies. We decide to take blankets and books and leave around 3 p.m., originally planning to set up at Battery Park and lounge the afternoon and evening away while diligently protecting our spot. Her boyfriend is coming to visit from Utah over the holiday as well, and we figure he'll appreciate the huge display.

The day arrives, however, but nobody except me wants to go. I assume this is one of her mood swings she frequently gets before we go out. Usually when I act excited she snaps out of it or goes along to make me happy and we end up having a good time. If that doesn't work, I can guilt her with an not-so-indifferent "fine." I continue to get dressed and ready my camera. She's now reluctant to go downtown and says that her employees at Hollywood Video suggest FDR Drive for a clearer, less populated view. OK, neither of us enjoys crowds, so that sounds like a better plan. It's after 6 p.m., though, so we need to go. We leave, but I'm the only one who's excited.

As we walk uptown, more and more people surround us. I walk alongside strollers and couples and families and children -- all of different nationalities -- toward the elevated highway. My friends lag behind me, her complaining about how badly she has to go to the bathroom and him whining about the drive being so far away. I slow down every block or so, usually at crosswalks, to allow them to catch up. I'm frustrated because we now need to stop somewhere for her to use the restroom and we're already late. Where the fuck are all the McDonald's? There are four near our apartment alone but none here. Near 23rd Street, we find one, and the boyfriend and I wait outside for 20 minutes while she waits in a must-buy-food-in-order-to-pee line stretching to the restaurant's entrance.

When we reach the 23rd-street checkpoint, NYPD officers divert the crowd back towards 14th Street. It becomes apparent that something is happening ahead, and we soon discover that police are conducting a security check. We can't access the highway-entrance ramp unless they search us, and this sets my roommate into a tizzy. Not only does she feel as if she's a cattle, but she refuses to have her privacy invaded. I feel badly for her but try to explain it's because of 9/11 and we only have a camera and a blanket in the bag. It doesn't matter; she wants to leave. I tell her it will be just a few more minutes. No, she wants to go. I refuse. She starts to weave toward the back of the line. I cannot believe she's desserting me. She says she's hyperventillating and can't take the crowd. I look up at her, all five feet nine inches. Is she serious?

"Just go. I'll call later," I say.

They leave, and I continue to push past the waists and asses of pushy pedestrians. Some lady with a baby stroller purposefully bumps into me -- I know it's intentional because she doesn't say excuse me or acknowledge the collision -- and tries to get ahead as if I'm going to take her prime position on the miles of available highway. I inch ahead. A large, shirtless, black gentleman comes to my aide. His body is covered in tattoos and in the hand that he isn't using to clear an opening for me he carries a boom box. "Move ovah. Let da little lady through," he says. I thank him once past security and he asks if I'll be alright. I tell him yes, and he continues up the drive.

On the highway, it's easier to maneuver through the spectators. There is still an hour or more until the fireworks begin, so I walk the equivalent of a block south and find a more open area. I park beside a group of college students playing cards on a blanket. I notice all the families and couples and patriotic fun. Tourists and New Yorkers relax and wait for the show. I flip open my cell phone and dial my uncle's number. I snap it shut, though, before hitting send. My family would be outside now watching their fireworks show and rating each burst.

A mother visiting the city with her teenage daughter asks if the area next to me is saved. I say no, and eight people sit down. They came with a group of teenage girls that are studying dance at Julliard, and the girls and their mothers are staying in some hostel run by nuns downtown. That's what the woman explains to me. Her daughter is beautiful and appears to be in her late teens, but in actuality she is only 14. Mother chats about the museums that they have been to multiple times, and I suggest common touristy activities. Although I know of many more unique pastimes that I could suggest, I refrain because she's too unfamiliar with the city and I don't feel like talking.

I'm disappointed being there alone, and it saddens me to have to experience this one-in-a-lifetime event by myself. At the same time, though, I'm comforted knowing I don't have to worry about anyone but myself. I'm parked high on the FDR Drive and waiting to watch the Macy's Fireworks. As dusk falls, I turn around and face the Manhattan skyline -- the Empire State Building's top is illuminated in red, white and blue light, and slowly more and more lights turn on in people's windows. It gets darker, and I watch buildings' detailing fade to silhouettes. I hear a burst. Then another. The fireworks last about 20 or 30 minutes. They're impressive, but I miss my family's mini-spectacular. I zigzag through the crowd to get the best view.

Time to leave, and the thousands and I file down the ramp and back onto the city's streets. Orange light from street lamps bathes the crowd, which suddenly seems tired and anxious to get home. Vendors gather along the street corners hoping for one last sale, and litter flutters against the curbs.

I take what I think is a shortcut through a large apartment complex. It's very beautiful and well kempt. The buildings are tall and secure -- brick -- and in the center of the oasis is a park and large fountain. Single chess tables line the sidewalks. They're empty, though, unlike the ones I frequent in Washington Square Park. Round and round the complex's sidewalks I go, slowly realizing, as I pass the same couple with a baby on a bench to my left, that I'm lost and walking in circles. It also occurs to me that I cannot hear the city and that I'm in a place that the constant business and neon lights haven't permeated. I'd later discover that I am in Stuyvesant Town.

I eventually, with the help of a Latino woman's directions, emerge onto First Avenue. Bombarded with lights, traffic and chaos, I'm once again at ease, and I walk home for the next hour through the East Village. People spill onto the sidewalk from the bars and parties, and I weave through the crowd. A woman backs into me and trips. It bends my footplate and nearly breaks my right ankle. She gives me an irritated look and says something snotty, I assume about me, to the man with her.

The side streets are less crowded, so I stick to them and drive as fast as I can to Washington Square Park. I park at the north end of the fountain and gaze through the arch and up Fifth Avenue at the Empire State Building. Happy Independence Day.