Wednesday, February 23, 2005


So often, my work is like looking at, dealing with, and addressing scars, both emotional and psychic. The physical scars are there too, of course, but it is the scars of trauma and life gone awry that make my work so challenging.

Today, once again, I had to actually tell someone that if they didn't start taking their health seriously and work with me closely, they would be dead within a few years. This scare tactic has worked before, and I see continued success in two people whom I have so directly challenged to "get on the bus" with me and do the serious work of recovery and healing.

In the course of this chilly but sunny day, I had to confront a certain individual who has never taken antiretrovirals---AIDS medications---and I had to tell her in no uncertain terms that the brain infection for which she was so recently hospitalized was a direct outcome of her ongoing refusal to concentrate and consider treating her underlying disease. She acknowledged that her inability to take her seizure medicines has landed her in the hospital several times with massive seizures, and I reminded her that if a major brain or lung infection takes hold at this point, she is most certainly going to die. She has so few T-cells (some of the cells that populate her immune system and give us a good indication of her immune health) that we sometimes joke in the privacy of our office that we could name each one since they're so few and far between. Poor gallows humor, I know, but so helpful when we're faced with such tragic realities.

Truly, it was not a "full-throttle" day, as it were, but I was more challenged than yesterday, and had many more plates in the air as I juggled my way through. Several times, I was struck with the awesome responsibility of assisting people through the healthcare system, of the underlying dysfunction of that system, and of many of my patients' natural or learned weakness in terms of self-care and self-direction. Many choices which seem like "no-brainers" (to borrow a very modern phrase) to me, are huge leaps for some of my patients to take.

For someone as priviledged as I, the obvious need to take medication to control a disease with which I am saddled is clearly obvious. Without a history of abuse, trauma, addiction, abandonment, deprivation, and disenfranchisement--not to mention second-class status in a world of white people who can't even see their own priviledge)---I can easily say "yes" to self-care, treatment, others' wish to assist me, the natural succor of love and compassion. But for so many people, the ability to say "yes", to rise above negative self concepts and self-loathing, is not so natural a skill. It is these individuals whom we try to reach as we send out the life-raft, offer a hand, extend ourselves a little more, offer a smile and a kind word on a consistent basis. Some take the bait, others try for a little while and eventually fall by the wayside. We will stop the bus and support them in their gradual or rapid demise, soothe their suffering and ease their pain, but there comes a point where there is no turning back and their death is only a matter of time.

I have watched these processes both as an objective witness and a committed player, attended the wakes and funerals, consoled the bereaved. It's not easy, I'll readily admit, and sometimes my frustration level is through the proverbial roof. That said, the show must go on, and whoever buys their ticket gets to play. For some, we force the ticket into their shirt pocket and drag them through the door. Others leave their ticket in the waiting room and return to the shooting gallery for their fix. There are always more tickets available but there are those who will never take the ride. My patient today is probably one of those who I will watch over as she fades into oblivion. I honor her scars, but can sometimes grieve her inability to take the proffered hand.

What do I do now? I offer consistent and caring advice for her to take. I meet her where she is and try to drag her further along if I can, either by logic or by coercion. If she doesn't take the bait, I do what I can and wait for her to crash and then pick up the pieces. If she dies, I tell myself I did my best and move on to the next person in need. It doesn't always feel like the best world in which to dwell, but I have my cozy abode, a woodstove, and a wife and dogs to curl up with when I get home. Priviledge has its benefits and its costs. I honor both, and begin anew each day.

Thursday, February 17, 2005

There But For The Grace of God.....

As I went about my day today, visiting patients in the hospital, talking on the phone with a crying client, sitting in a patient's home as we discussed her recent hospitalization and current treatment for complications related to advanced AIDS, I was struck by the relative blessing of my own physical health. With comparatively minor problems of low back pain, depression, high cholesterol, a hiatal hernia and acid reflux disease, I am healthy and in no way compromised in my ability to live life and pursue my dreams. Having spent no more than seven days of my life in a hospital over the last forty years, I'm blessed with relative health, intelligence, priviledge, and assets of many kinds. I may feel sorry for myself from time to time, cry into my beer and pray for a change of lifestyle and scenery, but I can count myself among the many who are not enslaved to the care of a chronically diseased and debilitated body which seems to betray one at every turn.

There are many times in my day when I can say, "There but for the grace of God go I", and today was yet another of those times when that phrase can save me from further morose and self-indulgent rumination. Once again, I am reminded of the blessings I hold in the palm of my hand, the ways in which I self-indulgently revel in my sorrows, and how I can choose to see my half-full glass as actually overflowing with abundance. It is a daily choice---in fact, it is a moment by moment choice---to embrace what one is given and see it as truly enough. "There but for the grace of God go I" is a reminder that life can turn on a dime, and one must seize what one has in the present, since the most fleeting of blessings can be lost in a flash, without warning. Self-indulgence is a choice, and one is well-served to allow its visits to be short and few and far between.

Monday, February 07, 2005

Sketches of a Monday

I hit the ground sprinting this morning. Everyone seemed to be racing today. Skid-marks on the carpet. Chaos is a frequent visitor to our over-crowded office and today was no exception. Let me illustrate:

Patient #1: Advanced AIDS, now on meds and doing OK. Almost died from liver failure last time she tried antiretrovirals (AIDS meds) due to her poor liver status from Hepatitis C infection. She has new-onset mental status changes and may be failing the prophylactic regimen we have been treating her with to prevent toxoplasmosis (a brain infection), a full bout of which she had last year before she started her new AIDS regimen. The visiting nurse calls to tell me that she seems worse today and I plan to pay her a home visit in the afternoon. I worried about her all weekend.

Patient #2: severe depression with psychotic features, anxiety disorder, hypothyroidism, osteoporosis, asthma. Originally from South America. I've worked intensely with her over the last 12 months to help her apply for citizenship. I successfully found someone to take her to Boston two weeks ago for her interview with the Feds and we had the citizenship exam waived due to her psychiatric disability---not a small feat. She passed her interview with flying colors and will be ceremoniously made a US citizen at the Hynes Convention Center in Boston on Wednesday. I take time today to search the web for bus schedules and call a few taxi companies in Boston to get an idea what it will cost her to take a taxi to the convention center from South Station. She calls me: she isn't sleeping at all and wants sleeping pills. I have to speak with her primary doc who called out sick today. Hasta manana, OK?

Patient #3: Brittle diabetic with poor control of his disease, Hepatitis C. Lives in a motel with his 22-year-old son. They are both IV drug users but my patient has been clean for a few weeks and is trying to get it together. His son shoots up in front of him which is a big "trigger" for him. Patient never showed for our follow-up office visit last week, and while I'm at another patient's house, I receive a page that he's at the office waiting for me. I call the office and tell them to send him packing. He needs to make an appointment. No kid gloves for him.

Patient #4: forty-year-old male with AIDS (fully controlled with meds for four years), Hepatitis C (treatment for which he failed), narcolepsy, uncontrolled hypertension, depression, and a history of IV drug use (for which he's on methadone maintenance). He's been showing signs of mental deterioration over the last year. Neuropsychiatric testing shows major deficits. We treated him inpatient in 2004 for presumed neurosyphilis but now the symptoms are back. I visit him at home--he breaks down crying as we sit on his bed, his wife standing to my right, Planet of the Apes on the TV. He's having suicidal thoughts and thoughts of harming others. He doesn't feel at risk of doing anything but I give them the number for Psych Crisis, just in case. I make a note to discuss his case during our HIV Provider Meeting this afternoon at 4, if I can make it back in time to the clinic.

Patient #5: I spend 90 minutes in the depressing home of a new patient, meeting for the first time. Arthritis, severe osteoporosis with multiple fractures of various bones, bilateral cataracts, emphysema (and still smoking 1 pack per day!), coronary artery disease, angina,pernicious anemia, a metal plate screwed into his broken hip last fall. Not a happy camper. Where do I begin?

Patient #6: African-American female who has come and gone from our program several times. History of IV drug abuse, violence, incarceration for assault and battery, young son with sickle cell disease, lost one of two twins while pregnant last year, the surviving baby doing OK and sickle-cell free. Patient has severe COPD (emphysema), still smokes, suffers from crushing migraines, and has severe depression and a relatively chaotic life complicated by parole. Her head feels like it's going to explode. I manage to find her an appointment for tomorrow. Just hold on and go to the ER if you can't make it through the night......

Patient #7: dry alcoholic with anxiety disorder and recent deep vein thrombosis (DVT--a huge clot in his leg from his ankle to his thigh). Couldn't walk for three weeks and never called me. If a piece of the clot had broken off (common occurrence), it would've traveled to his lungs and killed him instantly. He's now on blood thinners but can't keep up with the instructions, blood draws, and dose changes. Hasn't taken any Coumadin for five days. Can I scream now?

There's so much more, but you get the picture. The constant headaches, no-shows to appointments (a HUGE problem!), complicated lives, dysfunctional families (they've taken the "fun" out of dysfunctional), drug abuse, poverty, Medicaid fraud, inability to understand and process instructions correctly, you name it.

Do I love my work? Yes. Do I feel that I change people's lives for the better? Yes, often. Do I sometimes feel like I can't take it anymore? Absolutely. This is a Monday where I question my resolve to continue but know that I will. My spirit still keeps me in the moment and I shoulder the responsibility and continue on. I sometimes pine to be a nurse in a small town doctor's office, swabbing throats and taking the blood pressure of arthritic Jewish matrons. Is that in my future? I doubt it. Thriving on Chaos is not just the name of a book.

Saturday, February 05, 2005

The Saga of Patient X (cont'd)

For those of you who've been following the story of "X", my patient with alcoholic hepatitis, this is an update, of sorts. For those new to this site, you may wish to refer to several earlier posts, namely "Exhaustion" and "Recovery".

Last Monday morning, I paid a visit to X, who was, as I surmised he would be, hanging out at the bar which is his ersatz home, as it were, apart from his apartment which I've yet had the opportunity to visit. That said, I must say that he actually works at said bar and hall---cleaning, organizing, washing dishes, and otherwise pitching in for a small wage. It keeps him busy, off the streets, and allows him to earn a little cash which Social Security (SSDI) doesn't need to know about.

X greeted me warmly and eagerly, almost like a sheepish dog. He actually looked relatively well, his psoriasis less angry, his eyes less jaundiced. X swore that he's drinking only non-alcoholic beer (a step in the right direction, at least), eating well (apparently a chef's salad the day before), and drinking plenty of water. A cursory physical exam did indeed bear out the fact that the swelling of his legs is decreased and his blood pressure improved. The most worrisome factor now is a growing paranoia and anxiety which, thankfully, he's able to reconize and verbalize, adding that he's now eager to re-enter psychotherapy. I recommended decreasing his coffee intake from 8 or 10 cups a day to a mere two or three in the morning, in an attempt to decrease his anxiety and improve the quality of his sleep. While actions speak louder than words and many an eager patient will "yes" the well-meaning clinician to death, perhaps a renewed therapeutic relationship might solidify his tenuous and newly-found recovery, and break the pattern of poor habits which only serve to exacerbate his poor health, both physically and mentally. I take these signs at face value, and remind myself that even seven days free of alcohol is a gift that X is giving to himself. Stay tuned.

Another patient of mine who we will call "Y" had been in complete recovery, with fully suppressed HIV disease, excellent adherence to his meds, and a graduation last summer from an 18-month residential stay in a facility for Latino men with substance abuse issues. Having failed Hepatitis C treatment due to falling blood counts, Y still had shown great promise and was a model patient, quitting smoking and really cleaning up his act. After living in a lovely sober house for HIV+ men in recovery, Y disappeared last fall, ostensibly returning to Puerto Rico to see his family. He resurfaced two weeks ago, calling me on our office's 888 number from Puerto Rico, alerting me that he'd be back in town within two days. During a brief visit in the office several days later, I ascertained that he had stopped all of his meds and didn't currently have a place to live. I actually drove him to the bus station after our visit (a general no-no in my office these days), and he was planning to catch the next bus to a town 40 minutes to the east to stay with a cousin. Promising to return in two days for a clinic visit with a doctor, we parted with a hearty handshake.

Several weeks passed after he missed that appointment, and just this past Friday I received a call from a residential substance abuse treatment center in a city two hours from here, informing me that he's now residing at their facility. I requested a signed consent be faxed to me so that our two agencies could openly discuss his case, and having received that paperwork, am expecting a return telephone call soon to advance the discussion and learn the details of Y's current state.

These bumps in the road are just that---bumps---with the added caveat that for a person living with untreated AIDS and chronic Hepatitis C, recidivism back to drug use and avoidance of medical care can be exponentially harmful and worrisome. Nonetheless, when and if Y returns to my care, I'll plan to meet him where he's at, begin afresh, and walk the road with him, if he's willing to do so. Meanwhile, dozens of other greasy wheels beg for attention, and there's no shortage of needy patients for this nurse. Monday will open that office door once again, and I will surely hit the ground running, my plate fuller than it should be even before I sit back down at that cluttered desk, already littered with the flotsam and jetsam of last week's unfinished tasks. Oh my.

Tuesday, February 01, 2005

Midnight missive

It's going on midnight at the end of a long day. Every Tuesday finds me working my day-job, then commuting over to the community college to teach a class to LPN (Licensed Practical Nurse) students, away from home over 12 hours. Being only my second semester as a teacher, I'm still trying to find that correct balance between mind-numbing didactic lecture and somewhat-less-mind-numbing non-lecture activity. With reams of detailed information to cover, and a class of 25 tired adult students who also work and have personal lives and children to care for (several of my students work 11pm to 7pm after attending my 4pm to 10pm class!), I am hard pressed to keep it interesting and varied enough to hold their attention and make learning at least somewhat enjoyable, or at least not painful.

Tonight, I chose to spend 40 minutes reading aloud to the class from Sherwin Nuland's The Wisdom of the Body, the chosen chapter being a compelling story of a woman's brush with death from internal bleeding and a surgeon's heroic attempt to (successfully) save her life. The author writes so well--my students were on the edges of their collective seats and were the quietest and most attentive that they've ever been!

Overall, the class went well, and I end a long day in front of the fire with Mary and the dogs; Tina, the small grey canine snores at my feet, as she so often does. As the fire in the woodstove burns itself out, I prepare to retire to the warm bed and bid another day well-lived.

No regrets today. My work is done, it was done well, and I can sleep a tired but satisfied slumber. It's cold, the day was long, my brain is fried, but this is the current path of choice, and I embrace it today in its entirety. Life is for living, after all.