Sunday, August 31, 2008

Evaluation/Overview

8/20/2008
Ben Huntley
Esmeraldas, Ecuador
A loco hospital in the Latino hood

“Puedes coser?” That was the first question that came my way after the director at Delfina Torres de Concha provincial hospital introduced me to the ER staff on day number one. Coser, coser, coser… shit – what does that mean? I fumbled for the electronic dictionary in my pocket: to sew. They wanted to know if I could stitch wounds shut. “No, not really – but I’d like to learn”. This was just minutes after the director made it clear that for the next few months I was only to observe. So I observed as the first patient was put back together, listening carefully to step-by-step instructions on how to slip the needle through jagged lacerations… but from then on out I was on my own – sewing fingers and faces, tendons and toes, lips, tongues, and eyebrows - visible and un-visible parts of the human body, children and adults, whenever and wherever the need presented itself. And it didn’t stop there…

By the end of the summer I had delivered babies in taxis, on gurneys, through Caesarean, and in proper birthing rooms – I had pulled out babies and bullets, slapped together what machetes slashed apart, detoxed street drugs, rammed tubes through every human orifice, and even thrust my hand into a man’s belly, through his diaphragm and up under his rib cage to give direct cardiac massages in a last ditch attempt to save a life that was shot down and brought into the OR. To be frank, I was pretty much a doctor – mostly in the ER, mostly in trauma, but also in clinic, OB, paeds and other areas depending on the needs of patients and gaps in staffing. I hesitate writing that – I was pretty much a doctor – because it sounds so damn self-aggrandizing. But artificial humility has about as much worth as a hair on a bar of soap, and if I downplay these experiences then I am neither being honest to you nor to me – so instead I will just tell them.

Esmeraldas was not an ideal learning environment. Ideally I would have been at someone’s side the whole time, asking questions, learning – developing my understanding of medicine that way – the right way. And this is what I had hoped to find – but rarely do realities match expectations, and all the less so in the developing world. Instead, I arrived to discover an entirely different reality: a dirty hospital in shambles with two stethoscopes for an entire ER and probably an equal number of days each week when one or more doctors would fail to show up for only the Lord knows why. In Esmeraldas I performed above my training level, skill set, and comfort zone – I did procedures and wrote orders that I would never have been licensed to do or to write in the United States. And it was hard. All the time I questioned what I was doing, why I was there, whether or not this was right. In the end, though, I found a way to be at peace with myself and with the situation because the bottom line was that regardless of any technicality, if I did not perform, patients would wait for hours… or die. And so I did the best I could – sometimes putting in 100-hour weeks, all the time researching on the Internet what I did not know so that I had enough to carry me through the next day. Some of the time the research was trivial – like what is a swollen prepuce and how is it treated? By the time I figured that out, the patient was gone and I never saw another problematic penis again. Other times it was critical – like reading up on myasthenia gravis, only to spend the next 34 hours on the longest shift of my life with a patient in myasthenic crisis in the back of an ambulance, zigzagging at warp speed through the Andes to find a hospital that would receive her.

That is not to say I was without mentors – I had two: Dr. Nicasio Safadi and Dr. Christian Vargas, in clinic and surgery respectively, and they were great. Safadi was a natural teacher, and at around 3 each morning when the ER settled down, he’d pull out an old rickety dry-erase board and educate his peers on Glascow scales, syncope differentials or what to do in the case of true emergencies. Likewise Vargas spent an incredible amount of time with me in minor surgery and the OR. But more often than not, or at the very least a surprising amount of time, I was on my own. More than all the stories I walk away with, though - more than the experiences, the thrills, the crazy days – I have come away having gained a great deal of self-confidence, having understood that not knowing something does not mean I cannot know something, and that I should not wait around to be spoon-fed. This summer I learned to educate myself when educating myself meant something real – meant someone’s life, their discomfort, or their road to recovery.

I suppose after a page and a half of my gut feelings I should probably back track and lay down the premise of this crazy adventure – how and why I got there, and what I did on a day to day basis. In January of my M1 year I started flipping through pages of past student reports in the Global Programs office, hoping to find something that caught my eye. It was important for me to find a Spanish-speaking location because I figured of any language, with the rising Latino population in the US, brushing up on Spanish would prove to be most helpful in the years to come. A few papers interested me, but nothing really jumped out; I have done a lot of traveling and was looking for something less structured, not a cushy program that would take care of my needs. So I closed the books and jumped online to www.idealist.org - a website that lists tens of thousands of internships and volunteer opportunities worldwide. Filtering those down with keywords medicine, Spanish, etc – I finally stumbled across an organization whose mission statement I believed in: Yanapuma Foundation (www.yanapuma.org). Although they had not done much work in the healthcare field, they wanted to get involved using a model based on sustainable community development. Sounded cool, so I called. A few Skype interviews later and they had a place lined up for me to spend my summer months: Esmeraldas, Ecuador.

A couple things about Esmeraldas. It’s a big hot city (300,000 people) on the west coast, packed with more Afro-Ecuadorians than anywhere else in the country, and it is violent. Really violent. It is poor – really poor. And, like the rest of the country, it is strangled in racism. Yanapuma set me up with a safe, fancy hostel – but it was too nice, therefore isolating, and at $14/night was outside my budget. Within five days, however, Dr. Safadi helped me find another place in the heart of the central district called Hotel Chalet Real. Hotel meant my room came with a bed, a fan, a tv and a private bathroom. I rented by the month, $110, and shared the place with a few cockroaches. It was everything I needed, nothing I didn’t, and worked out just fine – about ten blocks from the hospital. Walking was not an option during the dark, however, as even Ecuadorians grabbed taxis (a buck a ride within the city – cheap insurance) to avoid getting jumped. It took me a while to figure out the hospital schedule, and for the first week I assigned myself day hours from 8-5 Monday through Friday, then a few hours on the weekend, which I had heard was crazier. But as it turned out, doctors in Esmeraldas’ ER worked “la guardia” (24 hours) every third day – and soon I jumped on with guardia numero uno, putting me with Safadi and Vargas. I was usually pretty tired after the 24 and would rest most of the next day, but then frequently popped back in during day hours on the other “off day” to lend a hand. Apart from a 10-day trek into the Amazon basin, splitting the time with a shaman/medicine man from the Secoya tribe and canoeing downstream with the Ministry of Public Health for a rabies vaccination campaign, Esmeraldas was it for the rest of the summer… just plugging away day in and day out.

I had studied Spanish in high school and taken a semester in college, but lost much of those abilities in the years since. Fortunately I pick up language quickly, though, and within a few weeks was running on my own two feet - interviewing patients, taking histories, talking with police, etc. After taking five days worth of classes in Quito, I moved over to Esmeraldas, but the first week there was rough. The Esmeraldeño accent is hard to pick up – they swallow their s’s and move their lips like a hummingbird’s wings. For a while I would just tune out Spanish in the OR that got blasted my way, clue into the Latin, read body language and get by that way. But the accent came with time and soon enough I was telling my own jokes, making people laugh, and had integrated myself into the team.

The trip ended up costing me more than I had anticipated. For one, I didn’t think that the Freeman Scholarship committee would award me money if I placed it at a high price, so I low balled my figures and told them I’d cover the rest. But even then I ended up spending more than my expectations. The ticket, on American Airlines, round trip from Cedar Rapids to Quito was about a grand. It was a few hundred to the Yanapuma foundation for office fees and private lessons, and three hundred for the apartment for the summer, but then between $10-$14/day for hostels when I was in Quito or on the road. Food at the hospital was free, which I ate whenever possible, but I also ate out. You wouldn’t think it would be so bad, but 60 cents for bread here, a buck thirty for some yogurt there, drop five for a plate of seafood, and by the end of the summer I was out a lot of money. The largest surprise cost, however, was communication – and it always is for me. Internet is only a dollar an hour (double that in some locations if you videoconference) and pre-paid cell phone cards always go fast – between 5 and 15 cents a minute depending on the cell phone company of the person you were calling… but like food, that goes fast too.

In the end, would I do it again? I don’t know know. I never felt safe in Ecuador – especially not in Esmeraldas, but I learned a lot. It’s not the place to be unless you’ve traveled on your own in sketchy places before, and definitely not unless you speak Spanish, because apart from an occasional “what your name is?” and a few feeble attempts at Whitney Houston’s “I will always love you”, no one spoke English.

If you’re interested in learning more about these experiences, they're all here. Start from the beginning and work your way back - and at the end, email me your thoughts: benhuntley02@hotmail.com

BH

Saturday, August 16, 2008

In gratitude

This has been a long, fantastic summer of learning, which would not have been possible without the support of many people who deserve to be recognized. So with gratitude, I would like to thank the Freeman family for financially supporting this endeavor, Robin Paetzold of the University of Iowa College of Medicine's Global Programs office for her permitting me to take this leap, to my family and friends for checking in on my sanity from time to time, to doctors Christian Vargas and Nicasio Safadi for their patience and guidance both in and outside those hospital walls, to the Ecuadorian interns rotating through Delfina Torres who housed, fed and befriended me during these latter months, and lastly to the patients, whose names I have changed, and their families who have generously allowed their stories and photos to be shared.

Friday, August 15, 2008

El fin

8-1-08 – Esmeraldas, Ecuador

In two weeks I’ll return home to Iowa, the land of milk and honey – to green fields and rows of corn, where farmers wear overalls and strangers say hello. For the most part people will be courteous to each other, and intentional with how they spend their time. I will also be intentional with my time, hiding in the Kalona bakery until the Amish concept of peace washes dirty old Esmeraldas out of my bones.

The grit here brought a patient in last week who was unaware of a bullet in his leg. The story he told put 9 millimeters in his chest but a machete through his groin. Crouching down, however, to look at the bullet mark in his leg, I astutely declared “Sir, I think you have a bullet in your leg.” That it was even plausible to mistake a machete slash for a gunshot gives me the eebie jeebies.

But as any good NRA card-carrying member will tell you, guns are not always used for evil; this allows peacekeeping officers to both serve and protect. Except that last night for shits and giggles a police officer snuck out the back of the ER with a doctor to fire artillery over the roughest neighborhood in town. It was kind of like rousing up a bees’ nests or throwing smoke bombs in crowds of drunks – not the brightest idea.

Speaking of bright ideas, the pharmacist has a couple good ones. One of my favorites involves smoking cigarettes in the hospital regardless the patients in respiratory distress. He stays in his office, though. I’ve seen another walking down the hall with a cig dangling off her lips like she was in the garden of Eden and unashamed.

Racism also rears its ugly head on the coast. I have not yet talked about it because I don’t quite know what to say other than it is here and it is awful. One of the nurses of Chinese descent is called China. I asked someone once what her name was but they didn’t know. Two months ago a big black guy came in with his face split open from his forehead down through his nose from a motorcycle accident. He was in discomfort as he came to and understandably uncooperative. “Stop moving,” barked the surgeon, who was trying to suture shut the wound, but the patient continued wrestling about. “Negro, NO!” Thwap – and he hit the dude hard on the side of the head with a pair of pliers.

Another doctor just utters “f***ing n*ggers” when he wishes to express his distaste. Black people are violent, he says. But it didn’t take long for me to point out a few exceptions: Malcom X, Martin Luther King Jr, or any number of black doctors and nurses on our staff. So he adjusted his stance to say that from his experience, on the whole, black people are more prone to committing acts of violence. To this I contested, “But Doc, black people also make up a higher percentage of the population – their violence is in proportion with their numbers.” He disagreed. So partially out of my own curiosity, and certainly to prove him wrong, I secretly began tracking cases of violence by race, putting gunshots, stabbings and bottle slashings in separate categories. But now I don’t know what to do because in the last three weeks the only tally I have outside the black-aggressor column is from a mestizo man who shot himself in the shoulder. Hoping for a different spin on the obvious, I asked a black police officer if black people in Esmeraldas really were more violent than the others. He looked at me like I was stupid - of course they are more violent. He didn’t say why and I got pulled away before I could ask.

A few days later three black men in their early twenties were shot down one block from the hospital. In spite our best efforts, two of the three died minutes later in our ER. After a long operation, the third pulled it through – but in the middle of the case someone started snoring. I looked up from the table and in the corner of the room the anesthesiologist had fallen asleep cross legged, arms folded, sitting on the floor with his back to the wall – an intentional decision. There is no way to tell for sure, but I wondered whether he’d have fallen asleep if the patient was of any other race.

My hope was to have left this place better than when I found it, having encouraged my colleagues to also want improvements in their services and in themselves. Toward that goal, we have become noticeably more efficient as a team in response to trauma cases, and we have even developed a trauma kit so that in true emergencies we have the resources to be self-sufficient. And we are getting better. But the system needs more than a kit, and more than three months of effort. On an individual level, I know I have contributed good – delivering babies in the back of taxis, sewing tendons, closing faces, and racing all the time for oxygen – but the macro level remains a mystery. Whether or not bigger changes will last is beyond me, but at the very least I know I come away richer. These have been tough months, but through them I’ve gained confidence in myself, and that confidence I trust will carry me through the years to come. I have enjoyed my time here but am ready for home, ready for the next challenge. Thanks for reading, BH

Sunday, August 3, 2008

Angél

7-26-08 – Esmeraldas, Ecuador

“Do you remember me?”

No ma’am, I am sorry I do not.

“I was here two months ago with my boy.”

Nothing clicked. Two months is a long time, filled with hundreds of patients – I cannot remember them all, let alone their families. I cannot remember their faces. A few of their stories, however, I will never forget.

“He was 12,” she said.

Yes. There it is. It exploded on that one tiny detail. Funny that should be the first clue she offered, because his age is burned into my mind. Yes, it would have been about two months ago that he lost his breath and turned cold.

I let my head drop as if words of confirmation were about to come out, but they couldn’t - so my head kept falling, slowly, coaxing the next bit to let itself be heard. The icebreaker. Either I hit the nail on the head, or I was absolutely wrong… but if I was right – if I was thinking of the right patient – then for his mother’s sake I had to ask the question before getting any more information. So it came out slowly…

He… died that night,” I confirmed, double-checking my memory.

“Yes, that was my son.”

We knew each other in that moment, his mother and me.

She lost his death certificate and wanted another – and wanted it in my handwriting. It did not occur to me until right then that when we ask families to fill out the personal information, forever the death certificate has their handwriting staring back at them. Of course I’d fill out the rest of the pages for her. His name was Angél - I’ll never forget that name.

Tuesday, July 29, 2008

Myasthenia Gravis

7-21-08 – Esmeraldas, Ecuador

Myasthenia gravis (MG), effecting two in ten thousand people, is not among the diseases you’d want to be genetically predisposed to if you had to choose (yes, Lizz, if an evil emperor took over the world and forced you to make a choice). It gets classified as an autoimmune disorder, but let me take a side step to explain what that means.

In the States, we all have a basic understanding of the immune system – the army of good guys that fight the bad guys, which prevent us from becoming ill. As it turns out, it is actually a bit more complex than that. Although this is an obscene over-simplification, allow me to further breakdown the army into two parts – antibodies and macrophages. During human embryological development, by random trial and error, our bodies mass produce billions of unique combinations of antibodies, which latch on to complementary amino acid sequences and flag other parts of the immune system for help – namely macrophages. Macrophages kill bad guys by eating them, but they need antibodies to tip them off that something foreign ought to be digested. In a perfect world, antibodies would be specific only to non-self items, such as bacteria, parasites, etc. But it’s not a perfect world. Although during the developmental process these billions of newbie antibodies are tested against pieces of ourselves and are eliminated if reactive, it is impossible to test every new antibody against all forms of self-proteins that are floating around inside of us. And so occasionally one makes it through the screening process undetected, then later in life finds its perfect match, who unfortunately is not a foreign intruder but a natural part of the same body. You can imagine the epic battle that begins – antibodies get mass-produced and latch on to an endless supply of proteins, which are then eaten up by macrophages and friends. It is akin to suicide on a cellular and sub-cellular level. That is autoimmune disease in a nutshell.

Now imagine if the troublesome antibody was specific to receptors for the neurotransmitter Acetyl Choline – the end point of neuromuscular joints. So what? Well, the brain sends signals directed to muscles through nerves, and nerves pass on that message to muscles through Acetyl Choline. So then, if you attack half of the receptors of Acetyl Choline, the muscles receive a watered down signal and are slow, weak and quickly fatiguing. The bad news is that the diaphragm is a muscle, and if it doesn’t move, you don’t breathe. This is the extreme form of myasthenia gravis, called myasthenic crisis. It describes Esperanza, a 27-year old, mother of two who rolled into the ER earlier this week.

“Can you talk?”
Slowly she shakes her head no.
“Can you write?”
She does not move.
Safadi puts a pen between her fingers and holds up a piece of paper. She starts moving her hand around in a practically illegible fashion: I have m-y-a-s
“MYASTHENIA GRAVIS! Do you have myasthenia gravis?”
She nods her head yes.

The puzzle pieces start coming together. This describes the huge scar she has down the midline of her chest, the aftermath of the removal of her thymus, an organ that pumps out components of our immune systems (a controversial strategy with the thought being that in select cases it is worth making a patient immunocompromised in order to decrease the likelihood that their body will produce Thymus cells essential for activation of B-cells that, in autoimmune patients, produce self-reactive antibodies).

Within an hour of arrival she was too weak to breath on her own and needed to be intubated, putting her at severity class 5 of an equal number of classes. Lacking mechanical ventilators, however, meant that Esperanza would be on the ambu around the clock for two days. The family was finally convinced that she would not get better on her own and came up with money they did not have in order to transfer her to a hospital with life-saving services, namely plasmaphoresis – a blood filtering process that removes autoimmune antibodies from the circulatory system. It is a short-term solution needed to buy time in emergency situations, as had become ours.

She needed a doctor for the trip, but we don’t have extra doctors. “Esperanza, my name is Benjamin. I am from the United States. I am here to help you. We are going to Quito together in an ambulance to get you more help. Is that okay?” She did not say anything, but reached her sloth-like hand out toward her mother who took it and assured her she’d be okay. After scurrying around for an hour, grabbing a stockpile of meds, putting in a secure IV and double checking what to do under plausible changes in her condition, I loaded her into the back of the Ambulance. As the door slid shut, Safadi shouted “Neostigmine every 2, Atropine every 3. Control her pupils and good luck. I’ve got my phone on me all night if you need anything.” Right, I thought, Neostigmine every 2, Atropine every 3 – unless her heart rate drops below sixty and she starts drooling at the mouth, then up the Atropine. If her pupils dilate open and become unresponsive to light, she’s oxygen deficient so she’d need more O2 out of the tank, and quicker, deeper respirations from the ambu.

The only flashlight I’ve got for checking her pupils is the one my mom handed me off her keychain on my way out the door 2 months ago back in is-this-heaven Iowa.

“Here, take this,” she said, “you might need it.”
“Mom – I’m not a kid anymore. I know what I need and what I don’t.”
“Just take it”

Thanks Mom.

Turns out I did need it, because their aren’t flashlights in the hospital and there certainly aren’t flashlights in the Ambulance – a 15-passenger van with a gurney, an oxygen tank, and a rack of lights and sirens up top. No cabinets, no seatbelts, no drugs, gloves or monitors. No monitors means the only way to detect her oxygen saturation is by physical examination – shining my mom’s keychain flashlight in her eyes and watching the response.

And then suddenly we were warp speed to Quito. Her mother and sister sat up front with the driver, a John Candy figure called The Mafia who consumed the wheel and punished the roads. I was in back with my buddy Brendan, an inner-city high school English teacher, attending to the patient. As The Mafia took his chances swerving through narrow traffic gaps and peeling out around cutback corners on our way into the Andes, the two of us were five minutes on, five minutes off the ambu. We kept getting slammed against the side of the ambulance, or pulled the other way across Esperanza’s cart. I breathed for her with one hand on the bag – the other hand free to catch my fall, wipe my brow, or brace myself against vomiting. Every few off-turns I checked her vitals, peaked in her eyes, and prayed against a crisis within an emergency, then shut myself down and tried to rest up for the next go around.

Her limp arm rolled off the cart and waddled around helplessly with each bump. I picked it up and put it in mine. “Espy, squeeze my hand.” I wanted to know if she could still hear me. Inside my warm grip, her cold fingers gave a little pinch. “Espy, if you need anything, squeeze my hand and I will try to figure out what it is you want”. An hour and a half later she started squeezing, but I could not make out what she needed. We did yes and no questions for a while - squeeze my hand if this is what you want – but her muscles soon became too fatigued to give consistent, reliable responses. So I put a blanket over her, hoping she was feeling cold and wanting warmth.

Before leaving Esmeraldas, she received her dose of the immunosuppresant Prednisone, but every two hours I snapped open a vial Neostigmine, drew out its contents and inserted the drug into her veins. Neostigmine blocks the action of Acetyl Cholinesterase (ACh’ase). In medicine, the suffix –ase denotes a degrading compound. In this case, ACh’ase degrades Acetyl Choline so that after a signal is transmitted from nerve to muscle, lingering Acetyl Choline particles do not latently fire off unintended muscle twitches. But if receptors for Acetyl Choline are blocked, then it makes sense to remove the degrading substance in order to keep more Acetyl Choline around longer in close proximity with potentially non-blocked receptors. Thus, pushing Neostigmine allowed her to maintain the ability for small muscle movements, which I depended on to tell me she was still okay.

We made the 8-hour trip in about 4 and a half, and finally pulled into Espejo – the largest, newest, nicest public hospital in all of Ecuador. It was quite shocking, actually, after coming from our little three-story trashbin in Esmeraldas to look up and see a fancy mountain-sized shoebox of healthcare eating a large portion of the sky and thinking this would be where my patient would heal. It was floored with the same square tiles the US puts in its shopping malls, which I followed through the 100-bed ER back to a lookout point where the evening’s head doctor was working. “Here are the transfer papers from Esmeraldas for a patient with Myasthenia Gravis,” I said, delighted to have finally arrived at this moment. He took them without saying a word. Brendan was still bagging Esperanza in the back of the ambulance because we did not have a portable O2 tank to bring her in with, but he’d soon be relieved.

“We cannot take her.”

“What?”

“We cannot take her. She has Myesthenia Gravis; we don’t have the treatment here for her illness. You should have called ahead of time,” he said smugly.

“But sir, you have to take her. You and I both know, with or without treatment, she is better off here than she is in Esmeraldas. We don’t have anything back there, you know that. If you don’t take her, she’ll die,” I pleaded.

“Look, you don’t understand. This patient is gravely ill. She needs a lot – she’ll have to be intubated…”

“She’s already intubated,” I interjected. “She’s got an endotracheal tube in place and we’ve been five hours on ambu getting her here. I am tired. I cannot physically get her back. Please take her.”

He tried another route: “Listen, kid, we only have a certain number of beds in the intensive care unit; we don’t have room for her -”

I was pissed and quickly retorted, “Tell me straight, you don’t have the treatment or you don’t have the space, because you’re changing your story. If you don’t have the room, then at least let the family put her body on the floor; I’ll teach them how to use the ambu and they can bag her until space opens up. It won’t take any of your resources, just a corner in a room somewhere.”

“Get out of here!” he barked, “You hardly speak Spanish. Quit wasting my time”

You fucking piece of shit, I thought. You scum of the Earth son of a bitch. At that I paused and stood there for a couple of seconds, letting the air between us chill - then, in a low, steady voice, asked “How do you sleep at night?”

Silence.

“You have not even looked at her, and she’s Ecuadorian – she’s your sister, and yet you’re letting her go. How do you sleep at night?”

Still the uncomfortable coldness of two people not hearing each other remained.

“Sir, at least lend me a few vials of Neostigmine to get her to Guayaquil.”

He looked dismissively at me and shot back in a condescending voice, “You’re really asking for Neostigmine? You’re not in America anymore with your fancy hospitals and nice things. We don’t have Neostigmine – not in all of Ecuador.”

Unzipping the front pouch of my fanny pack, I held up my last vial of the drug in question. “If we have Neostigmine in Esmeraldas, you have it here.”

The family was blank-faced when I relayed the news. By the distraught, disgusted look on my face, whatever I said clearly wasn’t good. But they did not seem to know what to do with it, so I outlined the options. We can either go to the other public hospitals in Quito or take our chances and go to Guayaquil.

They looked at me blankly again. “So what are we doing?” they wanted to know.

“That’s your choice. We got her to Quito but the healthcare system here is not as we thought. From here forward I can give her care but I cannot make the choices. This is something the family needs to decide.”

We tried the other two public hospitals and got the same story – no treatment, no room. The other ones, at least, lent us the meds we needed to continue our journey on to Guayquil – an even longer stretch, with the front-end beginning at 4:30 AM on a sleepless night. But as I told the head physician at Espejo, there was no physical way for me to continue on – so my now blistered thumbs took the bag one last time, showed the family how fast and how deep to breath, then set my watch alarm to get me up in time to push her next set of meds.

After a string of unfulfilling sessions of unconsciousness, I roused myself and started in on a conversation with Esperanza’s mother. According to the literature, 5% of patients with MG have family members who are also affected.
“Does anyone else in the family have MG?”
“No,” came the simple reply, “just her older sister, but she already passed away.”

There was a sobering gap between that answer’s expected emotional content and that which she used. While thinking on the meaning of this family’s acceptance, another card was dealt into their hands – from the back popped the news:

“Doctor, it’s not making the noise anymore”.
“What’s not making a noise?”
“The oxygen tank – it used to make noise and now it’s not making noise. Is that okay?”

Sure enough we had run out of oxygen, but looking worried wasn’t going to help the situation, and since there were no alternatives I decided not to tell the family the seriousness of this new twist.

“Doctor, how is she?” they asked, rephrasing the question.
“Clearly it would be better to have oxygen, but under these circumstances – with MG and without O2, she is doing remarkably well.”

Upon arriving to Louis Espernasa Hospital, we rushed her out the back of the rig and into what could have been Chicago’s Union Station – organized chaos with people walking every which way. Calling for oxygen and pushing our way into deeper and deeper chambers, we were finally taken seriously and could not have been happier. Care was handed over with respect - and as quickly as it began, so this crazy journey ended. It was hot on the equator, so on the way home I cracked open the windows, stripped to my boxers and tethered myself into the stretcher - 34 hours and ready for bed.



***

Intermission

***

Brendan is a great writer, and took the time to jot down his take on the same story for anyone to read:

Expensive music always has a monster baseline, “Boom, Boom, Boom, Boom, Boom” that jumps your bones up and down. Pulsing just above the baseline is the clap line, “Clap, Clap…Clap, Clap, Clap…Clap…Clap, Clap, Clap…Clap, Clap…Clap…” off beat and chaotic in a way that frenzies up the juices of the soul and gets them jiving toward the heart. Finally, in this three-seated coaster of sound, the front seat is reserved for the voice line “Gracias por Dios, vive Jesus Cristo”, delivered poorly in tone but with the voice of a lioness rich in hope. Amplify this concoction of lines to the fifth power, and let your ears be punished for the sake of a musical cleansing.

Listening to this beautiful ear-beating did not cost me a dime, but nevertheless, it was costly. It was costly because of where it was being published; not at an outdoor stage or at one of Ecuador’s many Discotecas, but rather, from the inside of a rickety ambulance, tearing at 140mph through the western half of the country to its elevated/mountain dwelling capital city. And it was costly because it was sounding through the air behind the most expensive thing possible; a human life.

What was wrong with the girl? I couldn’t tell you. Its name was 20 letters long and not easy on the tongue. But I can tell you that it was a vampire, and its teeth put her into a critical state at 9pm on a humid Saturday night. And the hospital balked, put its hands up, and shrugged. Operating in a world of uneven vampire remedies, it did not have a shot, pill, drug, or machine that could cure the bite. So they did the next ‘logical’ thing. They wheeled her into an unfortunate mans hearse and sirened her off to Quito. To stroke the conscience, and comfort the family, they threw two doctors into the back of the van. Ben and me…

Let me explain what an Ambu is to a medical ignorant like myself. Basely, it is a piece of stretchy rubber that, when inflated, is about the size and shape of a rugby football (more round than an American football). On either side of the Ambu rests a small hole for a tube to be attached to. Hooked up to an oxygen tank it doubles as an angel and a demon. An angel, because when squeezed with force, fills the lungs with fresh, clean air, sustaining life. A demon, because when squeezed with force, fills the fingers with fresh callouses, the hand with clean muscle cramps, and the mind with shots of frustration.
And it was in this juxtaposition, between angels and demons, between hope and despair, sleep and alertness, that Ben and I found ourselves pumping prayers from our hearts to our forearms, through our fingers, and into the failing body of a mother of two…

More than once, as my body jolted back and forth, and my stomach ran in the gerbal cage, I looked at Ben with the knowledge of necessity. Ben needed to check her eyes, to check her pulse and feed her shots, to whisper confidence into her ear and hold her hand. I needed to squeeze the Ambu, to catch her saliva on my leg, to stroke her hair, to pray to God. Her mother needed her lioness voice, an offbeat clap, and soft eyes for which to see her daughter. And finally, our bus driver, in some backwards way needed to remind me of John Candy’s “Uncle Buck” and needed to drive like a drunk Ricky Bobby in “Talledega Nights”.
None of us, the five of us, had the luxury of choice. We, all of us, needed to perform, all the way to Quito…


So the Lord God said to the serpent,
“Because you have done this, cursed are you above all livestock
and all the wild animals! You will crawl on your belly
and you will eat dust all the days of your life.” -Genesis 3:14

And there were snakes in Quito. Born to operate with coiled grips and sharp lickers, they dealt out injustice, one hospital at a time.
“No you may not bring her here” hissed the first.
“We just don’t have the right treatment” slipped the second.
“Can’t sleep here” gumped the third.
And from the king of the pack:
“Sorry, no treatment.”
“But this is the best hospital in Quito.”
“Well, we just don’t have room.”
“So which is it, you don’t have treatment or you don’t have room?”
“You don’t speak good Spanish, you need to go.”

And the venom stings worse, when applied to the veins of a crying mother. Worse, when pumped into a fading oxygen tank. Worse, when tapped into the skin of a dying patient 10 stretcher lengths from help and a renewed life. And then the music in our van stopped, and silence entered with a deep breath, a bitter sigh, and the realization of what must be done next…

Guayaquil. 6 hours. 6 hours!? 6 hours. Another drive, this time an oxymoron. Cutting into the shaft of daylight, the beauty of the creviced Andes stood next to the ugliness of the previous hours, the light of our world against the darkness inside the ambulance. Hope pushed up against despair. A decision from where I now sat, in the front seat, cheek pressed up against the dashboard. Remain in darkness, ugliness, and despair. Or reach for beauty, light, and hope?
For the young girl’s family the decision was easy. From the backseat, rising above the familiar sound of the Ambu, came a hearty laugh, and then another. And then another. And then a constant. Somehow, a dying girl was funny. But maybe not. Maybe in that moment, the girl wasn’t dying at all. Perhaps for them, dying wasn’t even a consideration, never even a possibility. Maybe this was what holiness is; catching the giggles in the midst of the absurd…

How many times can one stare imminent disaster in the face, and avoid it by the margin of a paperclip? This was the question yet again as we hit the heavily trafficked streets of Guayaquil, this time with a driver holding bloodshot eyes and fidgety hands. He was a man possessed by the wheel, driven by the adrenaline of maximum speed. But if there ever was a need for such addiction, it was now. Three hours earlier, the oxygen tank touched empty, and the only air our girl was receiving was the dry, dirty air from the inside of the van. Each breath was a crossed finger, a minor miracle.

And so it was with great charm and little tact that we slammed the brakes and busted her through the doors of Louis Espernaza Hospital in Guayaquil. And it was with great conviction and little argument that the doctors received her. And it was with great speed and anxiety that we pulled out of the parking lot before they changed their minds. And it was with great relief that we looked back and saw her fading from our reach…

With finality in our hearts at last, we moved back up the coast, toward our final destination. Stretched out in the previously occupied gurney, behind the sounds of chatter from the front, I began to scribble a soft poem. I found no luck in this poem, partly because of the endless bumps and swerves that were still fancying our aforementioned madman. Rather than continue to labor, I instead closed my parchment and began to hum a new tune. My mind found the right pitch, and I let it play me through the night…

“T’was grace that brought me safe thus far, and grace will lead me home.”

Pregnant Belly

7-16-08 – Esmeraldas, Ecuador

Yesterday arrived a mother with a family, complete with an entire life outside of these hospital walls. However, while she was here her heart stopped beating. But we brought it back. We saved her life. My own hands pushed in on her chest, pushed blood through her heart, pushed life through her veins. For twenty-four hours I watched a miracle evolve, but on the twenty-fourth it failed. The miracle stopped breathing when she was declared to have irrecoverable brain damage and she went home to die with her family. Her life was short but full; there were fifteen people in the hall waiting to take her home when the last tube was pulled.

But this new patient didn’t even have that - didn’t have the years to have that – didn’t have the time to make her mark or fall in love because she looked eight months pregnant, but with an ovarian cancer. It is a sneaky illness from a diagnostic standpoint because it remains indistinctive during the window of possible intervention, and by the time a diagnosis is made the cancer has usually metastasized to the point where nothing can be done. But you wouldn’t expect it in a girl so young. She is 13 and will be lucky to see 14. Child-bearing age is 12-50. This is the only abdominal swelling she will ever know.

Would it be a blessing or a curse to wake up every morning truly feeling lucky to be alive? Imagine what that would be like. Now imagine what it would be like at 13.

Role reversal

6-30-08 – Esmeraldas, Ecuador

I slept well last night, and into the morning – a normal morning, thank goodness; Lord knows I’ve needed one of those for a while. No alarm, just heavy eyes waking on their own accord. First a shower then a leisurely shave followed by a lovely date with myself to the bakery. “Two breads with cheese?” The gal behind the counter knows me too well. “Yes, two breads with cheese” I smile my normal smile and confirm my normal order. Two blocks later I slide into my usual internet café. My sister is doing well in Egypt and I’m happy to talk with her. “Take care of yourself, Ben - I love you”. I love you too, Lizz.

That is the last I remember of things normal.

The hospital was flooded with an inch and a half of soapy water, and people were all over each other like ants in an ant farm. Half the nurses were pushing years worth of gunk around with squeegees. This all comes as a result of the Minister’s suggestion that we wash the floors. At the time the Warden was embarrassed, but today he’s smirk, pacing up and down the halls, overseeing the large cleaning project like someone important.

I puddle-jumped my way back to minor surg and opened the doors: jam-packed and out of beds. There is a guy on the floor laying in a pool of blood. Safadi looks up at me from his knees in relief: “Ben. Oxygen. Scope. Tube.” Welcome to work. There is no leapfrogging this time – just a mad split-splattering dash down the hall, hopping over oncoming waves of water. The laryngyscope is where it’s supposed to be, but (not surprisingly) the free tank is without oxygen, so I take one from someone less needy. And alas, the stock room is out of intubation tubes, so I’m redirected to the OR, but they’re not in any hurry. Four minutes later I’m back with things we should have had in fourteen seconds.

The next few minutes go fast: oxygenation, intubation and two units of blood, but there is a bullet through his kidney, and what we pour in he pees out. That, and his abdomen is rigid – blood filled through some other hole, and soon enough his heart stops beating. The patient is too big for the gurney, so I straddle his head with the only real estate left and rhythmically sink the base of my palms into his chest – it gets easier when his ribs crack. But after a while I look down and my pants are soaked with the same juice I’ve seen trickle out of other post-mortem bodies, and there is no more hope in the air.

The awful brokenness of human souls fills the room when his family enters; his brother is shouting, his mother is weeping, and his sister is kissing his face - all trying to bring his life back the best they know how. But life is cruel and they cannot, and there is no embalming to buy them time, so friends and family gather and an hour later the funeral procession marches down the street. If ever I’m shot, I’ve decided to catch a cab to the airport and a plane to Quito rather than take my chances here in Esmeraldas.

Later in the evening I’m sewing up a badly cut leg, halfway down an 8-inch gap and putting in more anesthesia when the syringe slips, the needle flips, and I’m stuck with a finger prick and a few moments of awkward silence. We just look at each other, scared. Neither of us is sure what to do about this roll reversal. I am his patient and his past is my healthcare provider. His blood is about to make some pretty big decisions in my life. And yet his leg is still open – he is still my patient. His healthcare hinges on me, and my healthcare hinges on him. Neither one of us is sure of our outcomes.

“How long does it take to get the results?” I ask. My colleague responds half an hour, but the question is stupid and the answer doesn’t matter. I might as well have asked someone from Timbuktu whereabouts in the city they live because by that point I had no context for time. Thirty minutes or thirty hours would have felt like the same breathless expanse of nothingness. And I didn’t want to think about anything other than cryogenically freezing my being until the results came back.

Negative. Thank God. I’m happy, he’s happy and his grandmother shakes my hand. I could have kissed her feet, or her grandson’s feet, or anyone’s feet for that matter. Yes, if anyone had given me their foot, I would have kissed it in that moment just to feel my lips again and to allow my body to wake back up to the sensations of the world.

There is still the ever so small chance of a false-negative – that is, perhaps he has HIV that wasn’t picked up by the exam. In this scenario, perhaps then I also have HIV developing inside me. Protocol anywhere is to begin a regimen of anti-retro viral medications (ARVs) as prophylactic treatment in cases of recent exposure. This has been shown to be most effective if begun within the first 6 hours. But – there’s always a but, a lingering sucker punch, an awful aftertaste – I’m told the only ARVs in town are at the ministry of public health, which isn’t open on Saturday nights and which won’t open again until Monday morning. So I finished out the shift, then went home and slept 10 hours - woke up with no energy, washed my scrubs by hand and lay in bed watching them dry, thinking of nothing again. Waiting. waiting. WAiTIng.

Turns out the hospital did have ARVs – the doctors just were not aware of that fact. Also turns out the medication available is statistically useless if not taken within the aforementioned first 6 hours, so I leave empty-handed and wondering why they told me this. In a country of government subsidized free healthcare, what did the lady behind the counter care whether or not I popped a pill a day – at least I’d have had the psychological comfort of believing I was doing something. But no. We wait now and test again in three months – the time the virus needs to proliferate itself to detectable levels in my blood.

BH