Wednesday, November 29, 2006

Of Demons and Dementia

"Do you remember who I am?" I ask.

He looks at me quizically. I can tell his brain is working overtime. He's lying in his bed, a Batman DVD playing with the volume low. The Joker fires guns and Batman saves the day.

"You're my friend," he replies uncertainly.

"That's right, I am," I smile into his eyes. "But I also have a name that you know."

With a little prompting, he actually comes up with my name. He shakes his legs under the covers in childlike delight when I tell him he got it right. He seems so innocent, so pure.

He looks at me in earnest. "I was in Puerto Rico yesterday. I bought a dog and an airplane."

"Wow," I respond. "I thought you said you were in Puerto Rico on Sunday."

"I went back again and bought the airplane. I paid the guy a hundred bucks and I fixed the engine. "

He has AIDS dementia. Classic. Virus completely suppressed for years. Some changes to his white matter but no masses or lesions. People didn't used to live this long with a suppressed virus, so we're flying by the seats of our pants. He complained of devils and battled with them in his dreams. (Does watching violent movies help this situation?) An antipsychotic made him hallucinate. Now we'll try some steroids to decrease what we assume is brain swelling (he has a history of cerebritis). I'd love to take him to an acupuncturist or a naturopath. Maybe a shaman would be of service. But insurance doesn't cover such luxuries, so we have to use the tools at our disposal, thus more meds. We will eventually watch him slip away. Meanwhile, a local priest pays visits and helps to keep the demons at bay through faith and prayer. Maybe watching Animal Planet would be better.

Another patient also shows signs of AIDS dementia, but his virus is not suppressed and never has been. He can't tolerate meds well, has a history of poor compliance with treatment, and the virus has mutated exponentially in his bloodstream. Pockets of various strains are probably biding their time in distant corners of his body, waiting for a chance to circulate and propagate. His brain has been attacked by toxoplasmosis a number of times, and other illnesses have plagued him over the years. How long can he hold on? This weekend, devils sat on his shoulder and tormented him. A visit to church helped to calm his hijacked mind. The best we can do is treat the virus, keep it as suppressed as possible, support him in his compliance to meds, and send him to a therapist for treatment of his underlying depression and PTSD. The more serene and clear his mind from day to day, the less painful psychic torture he'll endure.

When faced with such conundrums of suffering, one can only be grateful for the small things that make life worth living. These gentleman are peaceful warriors, and we simply provide some tools for the battle, the least of which is a smile and a kind word. Love, after all, may be the best medicine around.

Monday, November 27, 2006

Simply Goodbye

He left six months ago for his homeland of Puerto Rico, certain that he wanted to die there. Five years of a professional yet intimate relationship were behind us: AIDS, cancer, remission, diabetes, wasting, cancer relapse, colostomy, and a downhill slide from there on.

When hospice at home failed, and wet sheets, untaken meds, and benign neglect demonstrated that being alone in his own apartment was not working, his family whisked him away to Puerto Rico, where he could come to rest surrounded by the smells and sounds of his motherland. I was sad to see him go, but happy for his reception into the welcoming bosom of family, and honestly relieved that my years of urgent calls and emergencies were over.

I had considered going to Puerto Rico to say goodbye, to visit him in his native land, but our financial situation and my responsibilities here stayed my hand. I also was just not sure that my appearing at his bedside would be truly beneficial to him, or only painfully remind him of all that he left behind, perhaps giving rise to unnecessary remorse and regrets that would have otherwise have remained blessedly subterranean. If I had gone, it would surely have been for me, not him, and I just wasn't convinced that it would be for the best. Instead, I erred on the side of caution, following the ages old adage, "Don't just do something, sit there."

We did have one telephone conversation about four weeks after his departure. I called the home where he was staying in Puerto Rico and we chatted for a while. I told him that I loved him, and that God would bless him and his family. He blessed me as well, and we hung up. Although I had planned to call again, the number on a sticky note by my desk, it just didn't happen.

Another goodbye, another letting go, another opportunity to say "I did enough". And I can say it truthfully. I did enough. No room for regrets. It's simply goodbye.

Monday, November 20, 2006

Of AIDS, Lunch, and Words

Today I was at a lunch for nurses and nurse practitioners whose work involves patients with HIV and AIDS. We meet monthly at a local restaurant (the tab picked up by a pharmaceutical rep) and discuss issues of import to us and our practices. The drug rep is quite respectful, never pushes her products, and brings in speakers who are in no way beholden to gear their talks towards our host's medications currently on the market. The food's great, the company is excellent, and we can all look forward to our meeting every month. The grilled salmon settled in my stomach very well, and I could just feel those fish oils decreasing my LDLs as I sat and listened to our local AIDS guru expound on the newest meds in the pipeline.

What struck me so clearly is how far we've come in the treatment of AIDS, the voluminous knowledge breathtaking in its scope. I can hardly begin to describe for the uninitiated the dizzying array of terminologies and diagnostic tools currently at play. It is simply astounding, as is the very international effort to further the research and share the results of that research worldwide.

When hanging out with providers or scientists who work in this field, there is a vast nomenclature which can leave the neophyte stymied and confused. Terms like "treatment-naive", "wild-type virus", "genotype and virtual phenotype" are bandied about in a way that demonstrates how they are second nature to those in the field. It is an intimidating ocean of knowledge in which I splash tentatively by the shore, sometimes up to my knees, and only several times have ventured too far and felt as if I was drowning. Not being a prescriber, I am free of the responsibility of prescribing such toxic medications, although my job entails monitoring my patients for side effects and helping them work through the potential misery while staying on course.

Towards the end of the talk I asked our presenter how these terms come into popular use among the AIDS community. For instance, how did the term "viral fitness" come into being? Who introduced it? Who coined it? Is there some governing body that announces the adoption of such terminology? Our presenter acknowledged that, no, there is not a governing body that hands down decisions on which terms will "stick" and which will be jettisoned to the nomenclature dustbin. Generally speaking, influential researchers will use a term for the first time in a published paper, and that term will be picked up by others, make its way into the literature, be adopted into PowerPoint presentations, be repeated in articles and professional talks, and eventually fall into general use by providers on the front lines. I wondered aloud if it would be interesting to write an article or a book on the nomenclature of AIDS, from the early days of ARC (AIDS-Related Complex) and PWA, to some of the current terms like "deep salvage" and "lipodystrophy". I wondered if I could (or would) write such a treatise.

After the lunch was digested and all of the talk somewhat assimilated, day to day life on the aforementioned front lines continued. One of my patients who has been living with AIDS for years, his virus currently suppressed for more than five years now, stopped by for a chat. Despite his excellent adherence to meds and our relative success in his treatment, he is wasting, losing weight alarmingly fast with no discernible cause. He smiled broadly, handing me a letter that came in the mail today, telling him that he was approved for 120 cans of Ensure per month for 12 months. My letters and applications had succeeded, and he would be assured of an extra 1000 calories a day for a year, not to forget the other nutrition therein. He beamed at me, and we even noticed that he'd gained a few pounds this month. Small victories mean alot.

On the other hand, a long-time patient of mine who just can't seem to beat back his virus was once again in the hospital. His daughter called me on Friday, saying that her father had a high fever, difficulty breathing, and very marked irritability and confusion. Due to his history of toxoplasmosis and seizures, I urged a call to 911 and facilitated his care at the ER by phone. Sent home hours later without conclusive evidence of anything being wrong, he was back in the ER on Saturday with a higher fever and even more severe mental status changes. He's like Job, it seems, beset by complications and symptoms at every turn, poor guy. I was so sad to hear that he had taken a turn for the worse.

On my way home tonight, I stopped at the hospital. His wife was placing a cool cloth on his forehead as I entered the room, and I held her as she cried on my shoulder. She' s HIV positive as well, but his health is always on the edge while hers holds steady. I've bent over backwards for this man, and I'll continue to do so, no matter how exasperating he can be.

He looked at me as his eyes brimmed with tears. I put my hand on his forehead and felt its heat. His misery was palpable, although when I asked him how he felt, he said in Spanish, "I feel a little bit OK". I reassured him that everything possible is being done for him and that I'd be back tomorrow.

Ducking into the nurses' station, I conferred with one of the residents following his case. She listened intently to my take on his last few years of treatment, and we bantered professionally about his case, those familiar words bubbling up into our conversation: opportunistic infections, toxoplasmosis, immunosuppression, fever of unknown origin, antiretrovirals. Our conversation centered on the clinical aspects of the case, but I also tried to infuse it with some of my understanding of the patient himself. We can all sometimes get so lost in the words, and we must sometimes make sure to remember to re-inject the patient back into the conversation.

While the description of the lunch juxtaposed with the face-to-face patient contact may seem somehow incongruous, I guess the point that I'm trying to make is that there is a balance between the clinical separateness---all of the words and concepts that make up our understanding of an illness---and the patients themselves, their stories, their humanity, their flaws and strengths. Where there are reams of papers detailing resistance profiles, mutations and the genotypic profiles of various viral strains, we can never escape the reality on the ground, the human side of the equation about which there is scant research and relatively little attention. Those lunches and talks feed our minds and sharpen our skills, improving the clinical aspects of our care, the intellectual work which is part and parcel of the struggle. But we must always remember that all of these words and names and labels mean something about an actual person, a being of flesh and blood who cries, laughs, sleeps, and dreams.

These are the places where the science and art of medicine and nursing intersect, and where the art, informed by the science, brings it all back to a simple hand on a forehead and a hug and a tear. The balance is easy to see, harder to attain, but crucial for us to truly deliver our best care each day. There is the nomenclature of science and the nomenclature of love and compassion, and we must speak them both equally fluently.

Saturday, November 18, 2006

Disempowerment 101

"I really need you to take more responsibility," I said.

"OK, I understand," he replied.

"You know," I continued, "when you come in for your bloodwork, it's because I need to check your blood's clotting time. If your INR is too high or too low, then we have to adjust your Coumadin dose, otherwise you could end up with a clot or a bleed."

"OK." He smiles.

It's like talking to a ten-year-old.

"When you come in for bloodwork, I need you to take an interest and call me for the results. I can't be chasing you down every week. This is the deal: when you have your INR drawn, I want you to call me aggressively the next day until we talk. I want you to think for yourself how important it is to know how much coumadin to take."

"OK. I'll call you tomorrow, for sure." We shake hands.

The next day is Friday. I wait until 3pm for his call. No dice. I wait til 4. Still no call. I leave a message on his voicemail with his dose for the weekend, chiding him for not calling me. Am I undermining my teaching by calling him and letting him know the dose even though he didn't call me? Yeah, probably, but I also can't let him run the risk of throwing a clot this weekend either. Hmm.

So, I called my little ten-year-old in a forty-year-old body. Again. Better luck next time.


Thursday, November 16, 2006

Abscess Makes the Heart Grow Fonder

"How did this happen to your arm?" I asked as I removed the bandage from his forearm.

"Oh, I was doing something and I slipped and cut it." His eyes darted around the room as he muttered his answer.

The hole in his arm is almost perfectly round, about 4 cm across and maybe 1 cm deep. It's granulating nicely, the edges clean. I dab on some Silvadene with a sterile tongue depressor after first cleansing the wound with sterile water. I cover it with 2 x 2 gauze sponges and wrap it nicely. I wish him well and head back to the pod to confer with the doc. The visiting nurses will watch it closely for signs of infection.

"Don't tell me," I say, "an abscess from poor technique while shooting up, right?"

"Of course," the doctor says. "What else?"

It could pass as a large cigarette burn, but it's too deep. He was hospitalized for acute heroin intoxication (just shy of an overdose), plus a forearm abscess which had to be excavated by the surgeon. Not his first abscess, plus a little bacteremia for good measure. Poor guy.

When I was a Baccalaureate nursing student, we had to do a community health project. Due to my persistence, my small group chose a inner-city drop-in center for IV drug users. We had health fairs and taught them proper technique for shooting up and how to clean needles with bleach solution. Our venue for learning was not a popular choice among the faculty, but if we could prevent a few infections along the way and befriend some addicts, wasn't a little harm reduction OK? We hung out with prostitutes, passed out condoms, and distributed bleach kits in "shooting galleries" around the city. It was quite an eye-opener for some of my suburban classmates.

Oh, the things people will do to their bodies for pleasure, for forgetfulness, for escape from pain. Memories of trauma fade away as the heroin courses through the veins or the effects of the crack go straight to the brain. To sleep, perchance to dream. It can feel so good but only lasts so long. And the abscesses and infections and cellulitis? Call them occupational hazards.

Compassion goes a long way, and if the abscess makes the nurse's heart grow harder, time for a vacation, or perhaps a new career.

Tuesday, November 14, 2006

Driving Me Backwards

(A nod to Brian Eno for this evening's title.)

Working in this unfortunate city, doing outreach to patients' homes, navigating the pock-marked streets, I have come to know the city more intimately than I had ever cared to. Compared to my somewhat bucolic college town where I reside, the city is a troubled landscape of poverty, drugs, corruption, and mismanagement.

Driving in this city---like in most inner-city environments---the generally accepted rules of conduct do not necessarily apply. Stop signs and red lights are apparently seen as no more than suggestions, hints at what action the driver or pedestrian might choose to take if they were so inclined. As I pass down many a city street, if I come upon a light just turning green for me, I will defensively slow down as I reach the intersection, assuming that a car or SUV could come careening from the left or right, through the red light, striking me as I cross the intersection in which I appear to have the right of way (at least as far as the traffic signals are concerned, that is). I sometimes feel my body contract ever so slightly as I drive through a green light, as if I'm just waiting for that eventual broadside impact delivered at the hands of a reckless city driver.

In this city's culture, cars seem like weapons, and no one---literally no one---considers making a kind or considerate gesture. Coming from our genteel college town thirty minutes away---thirty minutes which might as well be one thousand miles---I'm used to drivers stopping in their tracks to wave other drivers on, people allowing a bus to cut into traffic, or pedestrians to cross the street. Here in the city, pedestrians pay no attention to "WALK" or "DON'T WALK" signs. Adults model for children that cross-walks have no meaning, that on-coming cars are something to challenge, not to respect. Children dart out from between cars, adults cross the street at any time, from any direction, bicycles go against traffic, and miniature motorcycles (often called "Crotch Rockets") blast down the side streets, piloted by absurdly young (unhelmeted) children or similarly absurd middle-aged men, perched precariously on these toy motorcycles with powerful and noisy engines that belch smoke and fumes. Utter chaos.

How many times have I seen a car simply ignore a school bus and its flashing red lights? How many times have I seen an ambulance struggle to make it through a line of cars which refuses to follow commonly accepted practice and move aside for the screaming siren? How many times have I wanted to stop at a crosswalk to allow a pedestrian to cross, only realizing that another impatient car is sure to pass me illegally on the right at full speed and take that pedestrian's life in a nano-second? The Russian Roullette wheel seems quite busy in this topsy-turvy place, and I would never wish to hasten another's demise simply because I was trying to be nice, only succeeding to put another in unnecessary danger.

City life---another reason why I choose to live in my semi-rural sub-suburban haven. Being in the city from 9 to 5 is quite enough, but full-time existence in this chaos of spurned rules and broken laws would just be too exhausting for words.

Here's a quiet prayer for the city, its inhabitants, its rules that are constantly broken, and for those of us who travel its streets with frequent apprehension. May all red lights be honored, and may we all traverse the streets in peace.

Monday, November 13, 2006

The Ghost of Patients Past

Sometimes there are people who I just can't find. Sometimes they just don't want to be found. Sometimes they don't know they're lost. Sometimes they're dead (and then I certainly hope they know where they are). Anyway, being lost is a relative concept, after all.

Today I saw that a patient I've been looking for over a 18-month period was actually in the hospital. Based on his history---alcohol abuse, uncontrolled diabetes, end stage liver disease, and intermittent homelessness---I figured we might just find him "in house" some day, or hear that he was dead. Luckily, he checked himself into the ER last week, inebriated beyond mentation, his ability to identify himself precluded by the alcohol coursing through his blood. Admitted as "John Doe", he eventually revealed his identity, and although he could not state the name of the hospital, his address, the date, day or year, he was eventually able to state the year of his birth. Thank God for small favors. This piece of information led to his "John Doe" bracelet being removed and our peripatetic patient labeled as no one but his own true self. Hallelujah.

Enter the Outpatient Nurse Care Manager, alerted to the presence of said patient on today's in-patient roster, diligently dashing to the Neurological floor of the hospital to make some semblance of a connection with the lost lamb. Although said lamb did not seem to completely understand the purpose of this writer's visit, he was able to produce a crumpled piece of paper with what turned out to be an accurate telephone number for his brother, who thankfully answered his phone and agreed to drag his infirm brother for a visit at the clinic in a few days, following discharge later today from the hospital/hotel.

What struck me at the time of my visit was this patient's similarity to a past patient who I once described. This gentleman had ignored the needs of his diabetic and diseased body, choosing to drug and drink and abuse himself beyond a level that could be imagined to actually support life. One day, despite dire warnings that a disaster was imminent if he didn't change his ways, this unfortunate gentleman began to vomit so uncontrollably and for so long that he eventually blew apart his esophagus, gastric contents pouring into his (previously sterile) abdominal cavity. Miraculously, he survived, and is now institutionalized, and will perhaps be the recipient of an artificial esophagus some day with any luck, but his battered body will never fully recover from the insults visited upon it. His response to us after he awoke from a weeks-long stupor: "I wish I had listened to you sooner." This is regret of the saddest kind. And we wonder if we could have done more to convince him.

So, here we are, faced with yet another train-wreck of a patient, taking his body to the edge, taunting death and disability with a uncaring sneer, all of that alcohol pouring over a diseased body like gasoline on a fire. Can I convince him to change his ways and avoid a fate even worse than death? The odds are slim, but we'll try.

Does he truly conjure the ghosts of patients past? Oh yes, but in many ways his own inner ghost is just waiting with baited breath for the opportunity to leap from its mortal vessel and cavort among the other ghosts haunting this city of ours. And if he's dead set on releasing his ghost, then there may only be so much I can do to deter his trajectory from this overpopulated path of self-destruction. Unfortunately, he has a great deal of willing company on this sad and nihilistic journey, and the influence of his compatriots may completely overpower any dent I could ever make in the armor of addiction.

Ghosts, armor, disease, destruction---just par for the course on a very average day. God/dess help us all.

Thursday, November 09, 2006

Codependency Is Us

In the course of my work, there are always relationships which feel more personal than others, in which a more intimate connection is created over years of interaction. There are those which feel parental (either on my part or the patient's), those which feel dysfunctional, those which are a nice mix of personal and professional, and some which are "strictly business" ( I have very few of these, I confess). There are patients who say "I love you" whenever I see them, and I still experience moments of quiet discomfort as to how to correctly respond to such protestations. Then there are patients who are my chronological peers with whom I have a generational bond, not to forget those who are my juniors or my seniors. Transference, counter-transference and projection all play a part on this stage, and I am constantly vigilant for signs of codependency on my part.

There's a patient that I've written about in the past who is on my mind. Being white and about my age, he shares with me certain cultural common denominators, despite his coming from a very different socioeconomic background---working class, alcoholic abusive father, no high school diploma, stints of homelessness, alcoholism, and life-threatening chronic illness. Taking those similarities and differences into account, it's no wonder that we get along on some levels, but are universes apart on others. And it is here that the codependency begins.

My patient, having given up the drink and hopped on the wagon, no longer has the alcohol-soaked social connections which previously filled his life. While he is proud of his sobriety of almost two years, he also feels lonely in that sobriety, failing to find a social milieu in which he can make new friends and acquaintances. Underlying mental illness does indeed make his social life more challenging, and a curmudgeonly demeanor only adds to the boundaries which keep people at bay or on their guard when around him. Although he constantly complains that people look at him like he's crazy, his predilection for talking aloud and laughing to himself certainly keeps strangers at arm's length and precludes normal casual social interaction. Like I've told him before, if you act like the crazy guy on the bus, that's how you'll be perceived and treated. One reaps what one sows, even inadvertently so.

Since he has lost his social circle, this gentleman looks to me, one of our counselors, and the administrative staff of our office as part and parcel of his social life. He sometimes exclaims that we are his "only friends", and he periodically cycles through undisguised crushes on various members of the front office administrative staff, at times bringing gifts (other than small offerings of candy or snacks) which cannot be accepted. He even went so far as to give our counselor (for whom he proclaimed undying love) a $200 portable DVD player which was refused on the spot. He was crushed for days.

Several times, I have taken this patient out to lunch, as I will occasionally do with my more isolated clients. As he complains of his loneliness and isolation, I sometimes feel pangs of guilt over my privileged life, comfy home, circles of friends, supportive wife, loving family, and ability to vacation and recreate (in moderation, of course) as desired. When he tells me that he has no one to go to a football game or movie with, my heart sinks. When I hear of his many solo trips around our region to various events, I cringe. Knowing what town I live in, he drops hints that he had looked for me downtown on a recent Saturday at the Farmer's Market but didn't see me. He comes to my town to see local college football and basketball games, sometimes sleeping on a couch in the Student Union if he misses the last bus back to his house (forty-five minutes away).

Many a time my mind has wandered to a scenario in which this gentleman---or another patient---visits my home. How would it appear to him? What would it tell him about me that he does not already surmise? What further levels of envy or jealousy would it engender? Would I end up in a situation similar to that of Richard Dreyfuss' character in What About Bob? He's even made comments that he may simply find my house one day and surprise me. Oh dear. What would Richard Dreyfuss do?

How many patients have I honestly considered taking home and caring for? Far too many. How many have I actually gone so far for? None, and never will I do so. How many former patients have I promised to maintain contact with after leaving a job for another? One, and that contact remains active. How many patients' children have I given Christmas presents to? Quite a few. Will I do it again? Seguro que si!

So, when is it codependency and when is it simply being human? When is it OK and when is it going too far? How guilty does one allow oneself to feel vis-a-vis the lacks in others' lives when compared to one's own? These and other questions loom large in such work, and no matter how firm one's boundaries, they will always rear their heads again.

Codependency, anyone?

Thursday, November 02, 2006