Having Patients

       It’s a possessive thing. They are my patients, and I’m their…well…sortof doctor, for lack of a better word. But in my clinic (yes), we run it exactly like intern/resident clinic. I do history and physical, assessment and plan, discuss this with the patient, do education, etc, counseling, etc, then I go write up my note, write out the prescriptions, fill out lab sheets/imaging/referrals (if I want that), then I present to whatever attending is present. We go over the plan, they mostly sign and maybe change a few things, then we go see the patient and I re-explain everything, add/modify if there are changes, and that’s it. My patient. My patient gets a follow-up appointment with me.

            Or, did. It’s been six months (this is a different sort of medical school program that I’m doing…but…not terribly relevant right now). This was the first week I referred patients to people other than me, made them appointments with “other” doctors (as in, the others are doctors. I’m not lying. My patients know I’m not a doctor, not yet. But they see me as one, because I am providing the care).

            I remember the first time a patient asked me how I was, after I started in with my usual ‘how are you doing today,’ etc. It meant a lot. And it’s happened with most of them now. It means that…it’s not a one-sided relationship. Over time, I’ve learned and thought about how much of myself to share. Personally. No one’s asked me questions I didn’t feel comfortable answering. And of course I know eons more about them. But I’m there, too, and they want to know how I am, how much later I’m working, and to tell me that they like my shoes (the latter, actually, has happened several times).

            I remember the first time a patient hugged me. I wasn’t sure how I would feel about that at first. But…again, it’s always been appropriate. And it always comes out of an overwhelming…relief, sense of partnership, sense that they’re not alone in this and that someone is supporting me. There’s the patient’s wife who asked if she could hug me – she’d come in close to tears, so much going on, so much to manage with her husband who was so sick with so many different things. I helped, in small ways. And it was one less thing for her to worry about. Now, she hugs me everytime, as does her husband, and I look forward to seeing them and hearing about how their family is doing. They’re sad this is ending – and so am I. So am I.

This is where medicine is different – there aren’t that many jobs that are emotional, not that I know of, outside of healthcare fields. I not only know the story but I’m involved in it, involved in trying to improve it, shape it, and just being there to listen when there’s no one else to do that at the moment. I don’t know if I realized quite how much trust patients put in their doctors – not in all doctors, I guess. So many times it’s “have you been able to talk to anyone else about this?”

“No.” (says the patient).
“Do you think you could?”
“I don’t know/I’m not sure.”

Is it because I’m “objective”, “anonymous”, HIPAA compliant? Yes. And I am. But I also carry all of the stories. And I look forward, in each encounter, to learning more about how they enfold.

I was jubilant – out-loud, YES!!!! – in the residents’ workroom in clinic, the other day, seeing my patient’s lab values online. Cholesterol DOWN. It meant that, together, we’d done the right thing. Same thing when handed a chart with my patient's vital signs of the day - NO MORE HYPERTENSION! I go in beaming. (There are, of course, the flip-side stories. Not to write about today, though. Not today).

(No particular reason for the above. Just that...wildebeest are cool. Kenya, Maasai Mara, 2008). 

It’s funny, I wrote a blog post on a now-so-defunct-blog-I-don’t-remember-the-address with a similar title to the above. Six years ago, my first clinical experiences. College. I’ll repost that, just because it’s an interesting contrast. And a number of things are still true. I may start doing that with a few other things, actually. I’ve been writing about medicine for years. I’ve been writing about the conflict, this tension, for years. Some things will never change.

This is the beginning of that post:

“Patients are a virtue”

And this will be dedicated to them.  A few in particular, who have brought up these issues.  As preface, I've been shadowing a doctor in the city for the past few months.  One afternoon a week, I go in to the hospital…and follow him. In essence.  I'm in on the patient exams (except for the few- maybe three, or four- who haven't felt comfortable with a student there. understandable).  I've worked with the practice assistants too (PAs here, though in TX that means Physician's Assistant. very different), bringing in patients from the waiting room, getting height and temperature, starting to fill out their charts. etc. clearly I can't do much in the practical sense, not being ah, qualified, or even in medical school. 

Why am I there.  This particular doctor (RC, simplest to name as he signs his emails) was my professor a year ago for a course that was supposed to be "Literature and Healing." It turned into a poetry workshop, because he was the visiting poet for the year and the demand for his poetry workshop was so high that the admins decided he should have two workshops and no class. Disappointed, yes.  I had arranged my entire course schedule around that one class (and Thursday, 5-8 pm- ain't easy).  But more than that, I had wanted to take a course- any course- with him. To spend any amount of time with him.  Why?  He's the reason I'm still in science.  He is, in short, my hero.

My hero.  At the beginning of last year, I was so frustrated with science- with the curriculum- with the people- with the outlook- that I was very seriously considering dropping it altogether.  Giving up on what I decided ten years ago would be my life's work, and pursuing literature, alone.  OB (poetry advisor, teacher at the time of poetry workshop), knowing this dilemma, gave me a book.  RC's book, essays and some poems, describing his experience with medicine, why he became a doctor, and what it was like.  Reading, I was re-inspired.  His words made me remember why I loved science in the first place, why I did it, and what joy it could bring.  Besides reigniting my passion for research, he showed me that the fusion is possible- he is a physician (internist) and a poet, and pretty damn good (and renowned) at both.  (except for the research I would like to do), he, in essence, has done and is doing with his life what I aspire to do with mine.  He's doing it well.  And the man offered me, a year ago, the possibility to work with him at the hospital and share his experiences and get a feel for the "clinical aspect" of things.  I would have been crazy to not pursue this offer avidly.  As I did.

And my first-draft med school application essay (the fake one, the one I had to send to the pre-med board at college when I interviewed with them three years prior to applying and just prior to Peace Corps....). I wrote about shadowing Dr. Rafael Campo (the “RC” of above. I played at HIPAA with everyone’s names before it was cool…), physician-poet-mentor….

 This paragraph is from that:

Dr. Campo's clinic treats general adults, but he focuses on Latino patients and patients with HIV/AIDS.  I was astounded by the trust and confidence each patient gave him, but I was even more taken aback my Dr. Campo's personal relationships with them, no matter how long it had been since the last visit.  Each case—even the routine checkups—was truly unique, as each patient was unique.  He, as I aspire to do someday, seeks to heal not the illness but the person, to lovingly read each distinct narrative and respond to its artistic demands.  His Latino patients, no matter how fluent their English, opened their tongues a bit more loosely to describe in vivid color each symptom and episode.  One man's cholesterol and subsequent leg pain increased after a visit home to Peru, where we deduced his dietary changes may have caused the problems:  "you know, doctor, what the family feeds me at home!"  I chatted eagerly with another patient, trying to remember bits of my high school Spanish, and thoroughly confused him when I insisted I had a sixteen-year-old hija (daughter), when I meant to say hermana (sister).  "You look young" he smiled at me, indulgingly, his illness taking a backseat to the doctor he loved and his bumbling new assistant.  I marveled at the couple, husband living with HIV, wife sero-negative, who walked in with mountainous folders of information, ready to wrestle and harness science as it manipulated their daily lives.  Sitting silently in each exam, I soaked up the humanity with the medicine, greedily. 

It may be an “easy way out,” posting things I wrote six, no, six and a half, and five and a half years ago. My knowledge base has changed, certainly. I am, now, becoming a doctor, and in terms of getting the degree, pretty far into the becoming. This is two-thirds through the third year (of four). But, younger, less knowledgeable, a good deal less Spanish, I wasn’t wrong.

For now.

~j

November ending in red ribbons

Ok, it’s official, I didn’t win NaNoWriMo this year. (and by win, I mean write 50,000 words in November).

It may have been a bit ambitious to take on, alongside third year of med school and concomitant hours in the hospital/studying. Then again, I have been spending an hour – two every day writing; it’s just been poetry or essays. Or researching writing.

I did start. Like last year. I was planning to not write something new – I was either going to revise and finish last year’s novel (now at 65,000 words), work on poetry, or do…something. Else. But I sat down on November 1, taking one of the many, many breaks that are scheduled during anesthesia (seriously. The attending come into the OR every two hours. “Want coffee?” “Want more coffee?” “Have you had lunch yet?” Etc. No other specialty does this. I can imagine the surgeons glaring or snickering behind their masks, after they’re been standing for 8 hours without relief. At any rate)….

And a voice was there. So I started to write. It made me feel a little bit smug about my development as a fiction writer, as the voice arrived in first person and she is most definitely not me. Last year, I had started in first person and had to switch to third to keep myself out of it.

It’s an interesting story, maybe, though I don’t yet understand what’s happening, at all. I’ll finish it someday. The characters are: the main character, a little girl (nameless so far), the president (maybe Obama, probably not), and a few three-headed, wooden dogs. So far. I appear, as well, as a bystander at one point; I’m not sure if “I’m” going to be a recurring character. (At least, it’s someone who looks like me at a very particular point – ie, in Zoebefam when I was building the water project there. Only time will tell, I suppose, if it’s “me.”).

            This was a very different experience, in terms of writing – last year’s came to me in words. It’s very fluid, very poet-y prose, perhaps Jeanette Winterson-ish (if I flatter myself. All my influences are somewhere, after all). This year was all images, like I was flying/gliding somewhere and just writing down everything that I saw and encountered.

And it makes no sense. This story takes place in a world that is magical realism, perhaps, in another time period, perhaps. It seems to be some sort of speculative fiction – a genre I’ve read only small amounts of and do not know much about.

A sample of this year’s story, somewhere beginning-middle-ish:

(Context: I have no idea).

The girl looked strangely familiar. She probably lived in a candlestick. She walked toward me with a bounce, little flaring navy dress over transparent knee socks. Looking back at the president, his hand came off in her hand and she continued, unconcerned. The girl started floating a little, like the hand was attached to an invisible balloon without a string (and what do we need strings for anyway except cheese and hamsters?)

Looking into glass, she bit my ears. “This isn’t a wishing well,” the little girl said, “but I’ll throw coins on you anyway. Are you made of stones or salt? I’ll try not to melt you.”

“How would I know if I melted?” I asked her. This sounded concerning.

“Do you carry an umbrella?”

I looked at my elbows, Nothing there except some trailing ribbons.

“Then probably you don’t. “

Compare with last year’s random sample:

(context: Sera, main character, just smashed her finger into a wall, and she’s watching the skin change colors. This is from the middle/end of the scene).

Prisoners, tower-locked in membranes. Not the ones filling her skin. Catabolism – sanitizing catastrophe. Reversal of what is expected, from katastrophein down and turn. Strophe like ballads. Body like dead.

Delicate cleaving, coordinated cycles. Green comes first, biliverdin (Verdi like spring), carbon monoxide floating into tissues. Silent killer. Verdin turns to rubin, darkened red stone, breaking cells – monk-like chambers - into light. The white carriers, protein, to eat and build and break, albumen from alba, docks filled with too much color. In bodies red and green makes yellow, turning eyes and skin to gold.

Insensitive, unseeing to the slight new crook in the bone, Sera went to X-ray to earn more narcotics. White on black, gray for fat, water that wasn’t water. Photographing bones. Calcified proof of how long it would take you to dissolve.

The mind is strange and fascinating.

...And then the patient who does not have schizophrenia (who I thought, previously, likely did).

 This is relieving. I’ve been seeing him most days for the past few weeks, over which time he’s come to think of me as his psychiatrist or similar. – No, I never told him that, and he does understand I’m a student/in training. I am the one who recommended staying with the first drug regimen and adding one, though. I am the one who wrote the initial psych note and the follow-up notes. And somehow, somehow, this is counseling. Therapy. What I do with him, what we do. There was a study that did a case-control (not double-blind, but…something) on therapy with trained professionals versus therapy with other sorts of professionals masquerading as therapists (ie, architects, scientists…whomever). The patients did decently well. I’m not saying the discipline is useless – I believe the contrary, these days, actually. It is specialized, it is important, and the drugs can and do work.

Point being – part of the whole deal is just having someone to listen to you, who cares and is all-in. Who’s unbiased – as much as any human can be – because the only context in which they know you is what you’re telling them. They might get collateral (friends, family, previous physicians). But in general…

So I sit, in the yellow disposable isolation gown, with gloves on, and we talk. He talks, I ask questions, sometimes. The narrative bit is amazing. I have the agency to ask And then what happened? It’s an unfolding story to me, and somehow, in the telling of the story, he feels better – he says, at any rate. And I don’t think he has schizophrenia. Something, certainly, but it doesn’t seem to be that.  One of the psychiatrists who taught us a few years ago called it the “cancer of the mind.” True. Not for everyone – some people can recover from an initial episode of psychosis, and that’s it, or maybe they’ll have another one far down the line. That’s not what we see as often, though – but working in the hospital is its own bias. We only see the people who are sick.

(banner below is from AIDS Action Committee's website. Because I think they're really cool (used to volunteer there)). 

......And I’ll segue into World AIDS Day, a thought debate on does-this-sort-of-“visibility”-help-anyone, and December.

Addendum on the One Campaign – as far as I could understand, in 2005, their main message was “Africa is poor. Africa has AIDS.” Both of which are DUH, as in, clichés in language, at any rate, empty of meaning, digressive, pejorative, and oversimplified. Take that. But THEN, you get celebrities to play concerts around the world, bringing together tons of liberal, left-leaning, world-loving young adults to chant “Yeah!” to that sort of a message. And you don’t harness the energy. At all. You don’t use it to raise money. (“Awareness” in that arena is… what. Meaningless, in any manner I can see. Maybe someone with far more vision than I could create something spectacular). So, money. Volunteer hours. Donations of other sorts. ANYTHING. Millions of people there for free. Nothing happens. Except they buy rubber white bracelets, maybe (are those still in fashion?) And they go home feeling good about themselves. It’s like expensive shoe stores in Berkeley or similar telling you some minuscule percentage of the shoes you buy goes toward breast cancer research, or something. So you feel good about going shopping – there’s your good deed for the day. (at least that’s raising something for something. maybe. maybe.) At any rate.

I work in an HIV clinic in the states, now. This is a poor town (where I am currently). These patients do not have much income, and they get assistance from the Ryan White foundation (and federal) for ARVs and such. There are social workers in the clinic, case managers, a psychiatrist, nurses who do home visits…

And the patients look good. They look damn good, in fact. For 90%, you’d never know. They may have presented with AIDS, even, cachectic from tuberculosis or PCP or something in the hospital. Then they got into a care, on a good regimen, and they got better.

And damn, they look good. They come to the HIV clinic, get refills, basically, and take care of their hypertension, diabetes, hypercholesterolemia, insomnia, depression, chronic back pain, headaches, sore throats, etc, etc, etc….

We give them graphs of their viral loads and CD4 counts. This is pretty amazing to see, too.

They look good.

In Cameroon, I did see some who looked good. And I saw a lot who didn’t. And I saw a lot of babies die. (Another day. Another day). World AIDS Day? It’s pretty incredible what’s happened here. I won’t say it’s not. It’s absolutely incredible what the transformation has been, from GRID to the 1993 HIV/AIDS definitions from the CDC, ACT-UP, AIDS memorials (movements that did, I think, do something), the literature of HIV of that era (Mark Doty. Thom Gunn. Etc…), Angels in American, And the Band Played on, Rent, even... We’ve come a long, long, long way. So it’s easy to forget sometimes. Even fellows doing infectious disease/HIV don’t often see the kinds of opportunistic infections I’ve seen (wow, lucky me). We should celebrate the progress. We should disseminate the progress by figuring out ways that make sense to do that for other countries. And we should show the rest of the world – the southern world, the developing world, whatever – how well people can do with ARVs (HAART), and how well life can go on. This is the reality. “Poor” and “AIDS” and “Africa” have lost all meaning in connection to each other.

Far away, on the forgotten continent, who remembers Africa as more than a pop cause?

~j

And I leave you with a photo of my health club in Cameroon, performing a skit they wrote for World AIDS Day. December 1, 2006. (friends of mine). Below. 

I know the hospital well enough to walk with eyes closed.

I feel guilty. Like I'm betraying my patient, even. Giving such a nice, cheerful, engineer the diagnosis of schizophrenia. Maybe schizoaffective. Am I right? Does he have it? Yes, probably. Likely. But it feels like the kind of thing that shouldn’t happen to “people like that.” (I asked. He told me about the voices. I asked what they said. He told me). My bias. Societal bias. My judgy-ness. Societal judgy-ness. Whatever it is, it’s somewhat ingrained. It’s not that I think badly of someone who has it. I might feel sorry. I might pity. It’s a terrible label to give or to get. It’s one that doesn’t go away and one you certainly don’t want on your records, anywhere, if you’re going to be highly functional.

(but this is true of mental health diagnoses in general. Now, we’re not supposed to be denied for pre-existing conditions. We’ll see how that plays out. If it’s true – that would help eliminate/decrease one of the most unfair/unethical/immoral part-and-parcels of the health care “system” in America. (I said I wasn’t going to get political. I can’t help it. I’m incensed, everyday, over the injustices I see, everyday). There are some drugs you can hide behind. “Oh, it wasn’t for depression, it was for chronic pain. Smoking cessation. Epilepsy (harder to hide that one – epilepsy would inevitably show up, somewhere, if you had it, rather than bipolar disorder). Neuropathic pain – diabetes. What else do we prescribe them for. What else don’t we prescribe them for. Short course is easy. Maybe. Maybe).

So, the patient with schizophrenia. I’m trying to keep it that way. “With schizophrenia.” Psychiatric diagnoses – no, every diagnosis, ever pathology – is a noun. Yet we turn them into adjectives. The patient the team called “cancer girl” was the patient with cancer. “The schizophrenic patient, the bipolar patient, the dementia patient, the psychotic patient…”

The ones with, the ones with. (I’m starting to sound like the titles of a Friends episode).

It’s not just linguistics, not just semantics, to me. Giving people diagnoses as adjectives means they cannot be separated from their disease process – schizophrenic person like French person or blonde person. Yes, it’s a chronic disease – it can also be relapsing/remitting, it can be in remission – but that’s not the point. Unless a person embraces the diagnosis as part of their identity – there is a blind community, there is a deaf community, diabetes? (juvenile onset, maybe), there are groups of cancer survivors – but that still doesn’t mean people want to be identified or to identify in that way.

So it’s a shortcut. “The patient with schizophrenia” is one whole word longer than “the schizophrenic patient.” The latter, of course, becomes “the schizophrenic.” And in health care, we do “tag” people by diagnoses – it’s like a mnemonic.( I try to add to that names of loved ones, little anecdotes, home towns – small things. It’s a way in, back to the patient, in any return visit, next day, next month, next year. And it’s not just being PC or having good ‘bedside manner’ or whatever – it’s important to maintain that doctor-patient relationship in order to have a good therapeutic relationship, to work together in the treatment and prevention and management of illness and whole person).

But even at this early, early point, patients are starting to blend together in my mind. (The little tags help). People start to look alike, they have similar-ish stories, at least on the level I know, similar demographics, I’ve seen them in the same context, they’re taking the same medications, their lab values are approximately equal, we’re working on the same things…etc, etc, etc.

There will be something. The one who came in with her 23-year-old daughter with Down’s after I’d seen her for something-I-don’t-remember. The Latina woman, 40 something, with hypertension, hypercholesterolemia, diabetes… on metformin, lisinopril, hydrochlorothiazide, and simvastatin… except this one is estranged from her daughter. This one came in with her grandchildren once. This one had surgery and has a dividing scar on her abdomen.

Etc.

*

Psychopathology is hard. It’s hard to see the ones that can’t be reversed. And that can be treated, maybe. Maybe.

I saw a patient regain a language the other day. The story is one of the ones in medicine that makes me furious, which means it involves – always – some sort of human injustice and discrimination (these are the things I argue with attending about). And I argue about with anyone in this country who does not believe that health care is a human right and that the discrepancies in health AND health care are a violation of basic precepts of fundamental humanity. I could go as far as to cite the Geneva Convention. If you get me on the topic.

Well, watch this: http://www.pbs.org/unnaturalcauses/ . That’s one thing. Food for thought. And fodder.

Not going to talk about excessive spending. About full-body CT scans. About Parkland hospital and 7 counties punting responsibilities for a county hospital onto one. About how long my patients have to wait, about people in the ER 3 days, and about the little, little I can refer people for (dental? ophtho? mental health? substance use, versus acute detox in the hospital? The patient who came in with DTs and was in the ICU for weeks? I get angry. I get incensed. And I want to write about it).

Back to my patient. Because we learn through individual stories, I think, by putting a name or a face or a particularity to a narrative and not to statistics. My patient had Hep C and subsequent fulminating cirrhosis. He was doing pretty well with medications. He’d stopped drinking, hadn’t used IV drugs in about 20 years. He came into the hospital vomiting blood^*. From the liver disease, he’d developed a deficiency of clotting factors. During the hospital stay, he developed a worsening, severe headache. After a few days, they did a CT head – and it turned out that he had been bleeding, slowly, into his brain. At this point, he was obtunded, didn’t know where he was, could barely speak, and didn’t make any sense. Neurosurgery refused to take his case – to shunt, to operate, to do a spinal tap. Nothing. “He’s terminal,” they said.

After a consult from infectious disease and hepatology to say the patient was not terminal, that his bleeding diathesis could be treated, and – besides which – this immediate problem was reversible – they decided to do the procedure.

*Ok the medical facts might not make much sense because I am making them up. Altering, rather. To change the actual story, enough. The gestalt is true, though.

This is when I saw him.

That day, he only spoke Vietnamese, and I was able to communicate with him – a little – through the translator phone. He knew his name and birthday, he didn’t know he was in a hospital. (Are you in a store? a hotel? a hospital? your house?) (and…yes, this is the patient exam described at the end of the last post). Alert and oriented to…person, basically, not time or place or situation.

I returned the next day. He looked at me, smiled, and spoke in English. He started asking about when he could go home, joking about how much better the food would be there… he knew exactly where he was, why, and what would happen next. Few transfusions of clotting factors and he was okay. Otherwise healthy.

As I've heard about with stroke or with dementia, people can revert to only earlier memories, the more deeply ingrained ones. Language - there's not much more primal, urgent that is learned. He had it, sort of. And then when the pressure on his brain was relieved, he got the other one back.

I haven't seen many miracles like that.

 ~j