Friday, April 27, 2007

A Birthday Story

I recently paid a visit to an elderly woman for whom I served as a visiting nurse some years ago. We are still friendly and I check in on her from time to time.

Sitting on the side of her bed, I learned that her 74th birthday was only days away. I wished her well and I was somewhat surprised by her response.

"I hope that this will be my final birthday."

"Your final birthday?" I placed my hand on hers.

"Yes. I hope Jesus will take me. I'm ready to go. It's been a hard life." She crossed herself and fingered her rosary that never leaves her thin and fragile neck.

Of course, I could have responded like many people would, especially those for whom death is a failure, a sign of weakness. But instead I chose to meet her where she was.

"If that's what you truly want, I'll hope that for you, as well. But I would really miss you."

She grabbed my hand and pulled me close to her. Then we sat in silence, looking at the shrine in her room: the Virgin Mary, several crucifixes, a incongruous plastic dog and toy car, and other Catholic items of worship and devotion.

"Do you feel you've had a good life?" I asked.

"No," she replied. "It has been a life of misery, suffering, and hard work. Now, I'm too sick to even enjoy my years of rest." She folded her hands in her lap in resignation.

"Don't you enjoy your children and grandchildren?"

"Not really,"she replied. "I'm just in too much pain. I'm ready to go. I've almost died a few times but He always sends me back. I've had enough."

We hug goodbye. I kiss her on the cheek and playfully touch the end of her nose with my index finger. She smiles and girlishly wrinkles her nose and eyes. I note to myself that she will turn 74 this week, the same age as my vibrant and healthy mother. Oh, the ravages of poverty and deprivation on the human body and spirit!

Getting into my car and returning to the clinic, I'm glad that I didn't try to talk her out of her feelings or deny her desire to "finish up" and move on. At her age, after all she has been through, she deserves to welcome death if she so desires. Is it geriatric depression? Likely so. Is it treatable with antidepressants? Possibly. Should she be treated? It is debatable on many levels, and she would probably decline treatment anyway. A tough sell, at best.

So, happy birthday to my little friend, even as she hopes for an end to the succession of the years. Perhaps her wish will come true, or perhaps her Jesus has other plans. At any rate, when she finally gets to meet her maker, I'll rejoice for her and send her blessings on that joyous journey home. Until then, may her days be brightened by the small things which can mean so much: a smile, a kind word, a caring touch, a shoulder upon which to rest her weary head.

Wednesday, April 25, 2007

The Never-Ending Story

"What usually keeps you from taking your HIV meds?" the doctor asks. We sit looking at her.

"When I start using drugs again," she says, unblinking, holding my gaze.

"And how can we figure out when it's time to try again? Do you feel like you might be getting ready to give it another chance?" The doctor and I exchange glances.

"Oh yes, I'm ready. If you want to try, I want to do it. I know it's important."

I know she's sincere, but we've been here so many times. Once, she almost died from liver failure from her meds, a negative side effect of adherence. Another time she had toxoplasmosis (a brain infection) so bad she had a seizure, and that was because she wasn't taking her meds. Talk about a double-edged sword.

The doctor gives her the rest of the spiel. "You understand that without the prophylactic meds, you could get very sick or die from an opportunistic infection. If we can get you back on HIV medication, those infections are no longer a worry. But you have to stay clean and on the meds."

She's a very sweet person, and we've worked together for six years. I think we really admire one another. I've brought her kids Christmas presents. I bought her an alarm clock so that she would wake up in time to get her kids up for school since they were truant more than 100 days last year. I think she sold the alarm clock. She also sold her grown daughter's TV and DVD collection.

The doctor asks some more questions.

"Do you have a partner, spouse, or husband?"

"Yes, my husband."

"Does he know your diagnosis of HIV?"

"Of course, yes."

"Do you use condoms when you have sex?"

"No, never. He doesn't like them." She looks gravely at the doctor.

I chime in. "So, even though he knows he's at great risk of infection with HIV, he won't protect himself?"

"We've been together so long---more than twenty years. That's the way he is."

"Has he been tested?" the doctor asks.

"He won't," she says. "He doesn't even go to the doctor."

We end the interview and send her to the lab for the bloodwork. Sitting down with the doctor who is a second-year resident doing his Infectious Disease rotation, we begin discussing the case with his preceptor, an Infectious Disease Fellow at the hospital.

The preceptor says, "Haven't I heard this story a thousand times before? Cocaine, unprotected sex, avoidable opportunistic infections, virus out of control?"

"Probably ten thousand times," I say. "It's the never-ending story."

And so it goes.

Monday, April 23, 2007

Telephone Triage

A few choice snippets from some recent telephone triage. No judgment. Just reportage....

"I'm moving to another apartment and I think I threw away my Oxycontin. Can I get another prescription?"

"It feels like a ball in my esophagus."

"I was at the ER 'til four this morning because my daughter was sick. Now I can't breathe and my back hurts. What should I do?"

"That spot on my leg? It's really red and swollen and it hurts when I walk."

"I just can't do this anymore. I do everything alone. I have no friends since I quit drinking. I just wanna die."

"Yeah, I had intercourse with this woman that I'm falling in love with, and she doesn't know I'm HIV positive. Then I had this discharge from my penis but it went away. Should I worry about that?"

"I'm really stressed. I got this job, and taking care of my brother on top of that, plus the gas company cut us off three days ago. But at least my divorce is final."

"I feel so sick. I'm throwing up, my back hurts, I can't pee, I have diarrhea, and my head hurts so bad. Plus I'm all alone. Can you bring my meds over?"

"Keith, I just don't know what to do."

Saturday, April 21, 2007

Cultural Richness and Gratitude

Saturday afternoon, the sun slowly receding behind white clouds after a day of brilliant sunshine. Our Tibetan neighbors are having a gathering/party at their home. Prayer flags wave over their yard as the kids play basketball in the driveway.

Suddenly, the basketballs cease their bouncing as traditional Tibetan drumming, dancing and singing commences right in their driveway, some of the crowd seated in the open two-car garage. We can just make out the dancing figures through the trees, their house being about one-hundred yards from ours.

Depending on the wind, we can often smell the traditional sweet grass being burned during the prayer services often held outdoors in this quite suburban setting.

With a considerable number of resettled Tibetans in our area, this type of scene is quite normal and very welcome, bringing diversity (that overly used American word) and a sense of something other than bland, white middle-class America. Similarly, where my brother and his family live in New Jersey, Asian Americans and East Indian Americans abound, bringing the quality of food, intellectual promise, and culture to a whole new level.

Lacking such cultural richness in my own life, I am moved and curious at how these families manage to maintain their unique cultures amidst the tumult and relative crassness of American life. Their tenacity in holding onto their cultural roots and practices seems so much stronger than the relative assimilation of my Eastern European Jewish ancestors. While I acknowledge that I could have tried to retain my family's ancient culture myself, by the time I was old enough to consider doing so, I was already two generations removed from any such practice. And so it goes. I am always impressed when young people from other cultures choose to participate and continue traditional practices and languages even as they adapt to life in America. Their lives are only enriched by such an effort, and the rewards are myriad, I'm certain.

Having such a sweet celebration take place so close to our home is a reminder that we live in a society of rich multiplicity, and for that I express my appreciation and gratitude.

Friday, April 20, 2007

Passing the Gauntlet

Oh, Friday afternoon it was, and I waited with impatience for that clock to strike five pm. As that blessed minute hand reached twelve and the workday ended, so too ended my responsibility to answer calls and pages, to attend to further requests. With the tentacles of need being cut and the encumbrance of accountability relaxed, the stethoscope was stowed in the bag, the notes were filed, the charts returned to their proper place, and the report submitted to the nurse whose job it will be to answer urgent calls all weekend. It is certainly a satisfying gauntlet to pass!

While they may float through my mind over the next few days, I can rest in the fact that I have done my best and they can fend for themselves. The one with the abscessed injection site, the poorly controlled hypertensive, the woman who can't urinate, the other who's been vomiting---they have access to a phone, to an ER, to their own powers of self-care. I relax my grip, unwind the wound up brain, put the nurse-mind to sleep (or at least temporary suspended animation).

Now is the time for focus on the self, my own needs, my own desires, the needed rest of body and soul. A deep breath from which to drink deeply.

Tuesday, April 17, 2007

Thirty-Three

Thirty-three dead. Precious lives were lost, the violence fueled by handguns so easily acquired. The parents of most college students around the country feel less secure today, less certain, less trusting.

Lives are shattered around the world each day: in Iraq, Palestine, Israel, Colombia, Mexico. Today it's our turn to once again acknowledge that suffering, loss and death are universal and know no borders.

May all beings be free from suffering. May all beings be at peace. May those who mourn find comfort.

Thursday, April 12, 2007

Thinking Blogger Awards

Several weeks ago, I was honored to be tagged for the Thinking Blogger Award by both Nurse Ratched and N=1 over at Universal Health. Continuing this "meme" has been on my back-burner, so to speak, and I am finally taking the time to fulfill my commitment to continue the tradition.

The participation rules are simple:

1. If, and only if, you get tagged, write a post with links to 5 blogs that make you think,
2. Link to the original post which gave birth to the awards so that people can easily find the exact origin of the meme,
3. Optional: Proudly display the 'Thinking Blogger Award' with a link to the post that you wrote (here is an alternative silver version if gold doesn't fit your blog).

(Due to my negligible skills with html, I cannot figure out how to display the award, but at least I know I received it and can tell you about it in words.)

Now, for the real work at hand: choosing my five honorees. While Nurse Ratched charged her honorees with choosing five blogs in the nursing/medical blogosphere, I am choosing to abide by the original rules which does not designate a specific category of blogs from which one must choose. While this is a difficult choice to make, my five choices are:

1. Death Maiden: while Death Maiden has not been posting recently, her blog is a veritable treasure trove of thoughtful musings on life and death.

2. Graceful Presence: a blog reflecting Buddhist thought and wisdom from a personal perspective. Simply lovely.

3. The Happystance Project: Tony Plant's UK-based blog promoting his outstanding work and outlook vis-a-vis the spreading of happiness for carers and caregivers worldwide.

4. Adventures with Multiple Chemical Sensitivity---Tales of the Masked Avenger: the Masked Avenger is my hero. She confronts MCS head on---with no apologies---and paves the way for all of us who live with MCS and related conditions. Give that woman a gold star (and a chemical-free world)!

5. Donor Cycle: TC over at Donor Cycle writes about her life as a Transplant Coordinator, an often thankless job which saves lives most every day. She is a hero in my eyes, and worthy of recognition for her work in what some may consider a subterranean sector of healthcare.

Those are my choices, folks, a diverse grouping which encompasses healthcare, Buddhism, chemical sensitivity, and the proliferation of happiness among caregivers. Please pay them a visit, and decide for yourself if these writers set your mind to work.

Blessings.

Sunday, April 08, 2007

Easter Sunday, Niagara Falls

We are ensconced in snowy Niagara Falls on Easter Sunday, with one day to rest and relax before our Laughter Yoga training begins. Most places are closed for the holiday---even the local Starbucks----so the day is free and open to exploration and, most of all, doing nothing (or next to nothing, that is). Having left our original hotel after one night due to inadequate facilities and strong chemical smells throughout the hotel and rooms, we immediately packed our bags this morning and found a much more agreeable locale where we can feel comfortable, with no obvious triggers for our Multiple Chemical Sensitivity (MCS).

Last night, we went to great extremes in order to be relatively safe in our noxious hotel room: cramming towels into the space at the bottom of the door to block out the strong chemical stink of the hallway which leaked through the cracks around the door; sleeping with a window open to the 25-degree (fresh) air; and sealing the bathroom shut since it stank of cigarettes, the stale odor of which was pouring in from the broken "exhaust" fan. Luckily, Mary slept with sheets and pillow cases brought from home, sparing her the often bothersome facial rashes which she experiences from hotel bedding. Oh, the places we go!

Traveling with MCS is a significant challenge. Hotels are ubiquitously cleaned with harsh chemicals, fragranced products, and deodorizers. Sheets, towels and bedding are washed in scented detergents, dried with fragranced dryer strips, and sometimes sprayed with flower essences in fancier establishments. Add to this picture residues of recent guests, cigarette smoke, carpet shampoos, new carpeting, recent painting or renovations, and a host of other products or activities, and the person with even mild MCS can face a traveling nightmare. Last night was no exception, but after a very long drive and arriving at 11pm, looking for another hotel when exhausted (and irritable with chemical poisoning) seemed even worse than spending one night in our reserved room. That said, since we had called in advance to request a room free of chemicals and the use of cleaners for 24 hours prior to our arrival, the hotel manager was kind enough to not charge us for our stay, making the transition elsewhere less painful indeed.

Being Easter Sunday, we are experiencing our own rebirth this morning, rising out of the nocturnal ashes of our petrochemically intoxicating stay at the first hotel. As a middle-aged (who, me?) man of Jewish descent who was raised in an excessively secular home (where Christmas and Easter were celebrated as mainstream cultural extravaganzas of candy, tinsel, Santa Claus, eggs, and bunny rabbits), Easter has little personal meaning for me in and of itself. With only marginal ties to the pagan community, I understand the meanings of rebirth, the equinoxes and solstices and such, but I am, by and large, a man without a religion or culture. Sad as this may seem to some, it is my personal creation, and my church, as it were, tends to be that most expansive and welcoming of churches---the "Church Without Walls", Nature herself. So on this Easter Sunday, we will go take a look at the icy, snowy and windblown falls of Niagara, and send our wishes for cleansing, rebirth and new beginnings, sending outmoded ways of being and thinking careening down the cascading waters.

Friday, April 06, 2007

Vulnerable

Vulnerable. They are a "vulnerable population" and that is why we serve them. Why are they vulnerable, you ask? They are poor. They are mostly people of color. Many of them do not speak English, or speak very little. They suffer inordinately from chronic illness. What illnesses? HIV/AIDS, addiction, Hepatitis B and C, tuberculosis, asthma, diabetes, hypertension, gastrointestinal illnesses, autoimmune disorders, chronic pain, mental illness.

The vulnerable often live on the fringes of society. They live in public housing projects plagued by poor sanitation, roach infestation, vermin, poor maintenance, shoddy and outdated construction. High-rise apartment buildings with only one elevator which consistently breaks down are the norm. Poor security is de rigeur. Litter and trash are ubiquitous. Drugs and guns flow in the streets. Violence is accepted as a part of life. Apathy can be contagious.

When one feels disenfranchised by the society, one learns to value one's environment and surroundings less. One also may begin to value even one's self less, as well. Elders are abandoned to poverty. Children are left behind by a school system in shambles. Agencies serving the poor become corrupt at the core, bleeding the funds away from their intended recipients, filling instead the bellies of the prosperous. Young men are carted off to jail by the score, while their pregnant young girlfriends quit school and lose their drive to succeed and escape the cycle.

We see it every day. We wrestle with it. We cajole our patients into action, into self-determination and responsibility, health and self-care. Well-being. Being well. We want them to be well. To be more than well.

They are vulnerable, and we seek to empower and protect them. To heal them. To help them heal themselves. The healing is done not only on a personal level. Healing takes community, partnership, a certain level of "buy-in" by a critical mass of the population. Many hands make light work, and we consistently reach out for hands wherever they are proffered. We join hands across this troubled city and seek any path which may lead towards elevation and growth, upward movement, empowerment, healing.

Vulnerable. Yes, they are vulnerable. And we reach out our hands. Again. And again.

Wednesday, April 04, 2007

Nurse Pre-Vacation Syndrome

Diagnosis: Nurse Pre-Vacation Syndrome (NPVS)

Etiology: Co-dependence, inadequate toilet training

Signs and Symptoms:

*Delusions that one's patients will probably die if you leave them in the care of others

*Possibly realistic fears that paperwork and charts on your desk will mate and multiply in your absence

*Memories of previous vacations in which said vacation was spent recovering physically and emotionally from the amount of preparation needed in order to take a vacation in the first place

*Resentment of co-workers who are not about to go on vacation

*Feeling like this will be the last vacation you will ever take "because taking a vacation is too much work"

*Already planning what you will do when you return to work

*Inordinate amount of time spent on Mapquest

*Distractedly gazing out the window

*Telling your co-workers that they can call you on your cell-phone with questions about difficult patients while you're away

*Lottery fantasies

Treatment/Goals:

1) More frequent vacations (practice makes perfect)

2) Re-read Codependent No More

3) Leave cell-phone at home "accidentally"

4) Take even more vacations

5) Quit your job

6) Read Codependent No More again


Prognosis:
Especially good if you adhere to treatment goal #1.

Monday, April 02, 2007

"To Sleep, Perchance to Dream......"

We send an inordinate number of our patients for clinical sleep studies, and many of them return with diagnoses of Obstructive Sleep Apnea, Restless Legs Syndrome, and occasionally more esoteric scientific labels of "disordered sleep". It is widely understood that individuals with morbid obesity often suffer from apnea---periods during sleep wherein respiration will temporarily cease---and a considerable cohort of our patients spend their nights tethered to machines which enable them to breathe normally during those hours set aside for nocturnal rest which most of us take for granted.

It came to my attention today that some cutting-edge and forward thinking diagnostic sleep centers are beginning to offer sleep studies in hotel rooms rather than the relatively sterile sleep labs generally located in hospitals and medical centers across the country.

Many of us have difficulty sleeping in strange places and foreign beds. If we knew we had a sleep disorder and were sent to a sleep center for diagnosis, why would we necessarily be comfortable enough in a laboratory to fall into a sleep pattern which mimics that which the technician would like to monitor and assess? Thus, a new marketing niche for sleep centers and hotels is born.

In Chicago and Cleveland, these hotel-hospital alliances seem to be thriving, and patients apparently appreciate the more cozy and private environments which can create sleep experiences more closely aligned with a patient's natural sleeping state.

So, is this type of "boutique" healthcare only for a select segment of the population? Who would be offered such a service? Who would be denied? Who would never be told it existed?

For those readers who already are acquainted with this writer's sociopolitical stance vis-a-vis the provision of equal healthcare for low-income populations, you will not be surprised that this trend of medical care does indeed raise a few red flags for me in a certain contextual framework.

Working with low-income Latinos on Medicaid in the inner city, I immediately wonder how many of our patients---if, of course, they met clinical criteria---would even be offered such a service. Our patients---most of whom have never been able to afford a single night in the most moderate of hotels---live in public housing, have little access to transportation, and certainly live as some of the poorest in the country, most well below the official level of poverty.

Consider for a moment the following scenario: Medicaid and, say, Blue Cross/Blue Shield will both agree to pay for a diagnostic stay in either the traditional hospital sleep lab or the hotel version. A provider in a sleep disorder clinic has a university professor with narcolepsy in exam room #1, and a disabled Latino woman with obstructive sleep apnea in exam room #2. Given that each patient meets clinical criteria for a stay in the new Marriott-based sleep center, and each insurance will reimburse at the same rate, which patient will be offered the opportunity for a night at the hotel-based clinic, and which will be relegated to the cinder-block sleep room at the hospital? It's a no-brainer, really, and my trusty "Healthcare Inequality Detector" (patent pending) reaches the red zone of the meter in no time.

Call me cynical, folks, but I have seen enough in the last ten years to know that our patients will often----but not always---be sent to the back of the healthcare bus, so to speak. I don't always mean to be a burster of bubbles (or do I?), but when I see a new specialty being offered that potentially smacks of elitism or classism, I somehow feel the need to point out the potentially inherent disparities which may be encountered therein. As I explore the new offerings of such services in our region (which are now beginning to manifest), this will be one aspect of such care that will certainly fall under my scrutiny (and that of my aforementioned Healthcare Inequality Meter).

So, in your wanderings and peregrinations, dear Reader, keep an eye out for such disparities, empower patients to receive the care they need, and champion the notion that even the poor deserve a good night's sleep at the Raddison (especially if Medicaid is paying the bill).