Today is World AIDS Day, and the official website has a great deal to offer in terms of information, opportunities for activism, events, and other ways to get involved.
With 33 million people living with HIV worldwide, World AIDS Day is now in its 21st year and was actually the first international health day commemorating a particular disease. While World AIDS Day in the UK has chosen the theme of "Respect and Protect" for this year, the theme chosen by the global movement appears to be "Leadership", based on their website.
Regardless of thematics, everyone involved seems to agree that there are certain aspects of the fight that necessitate further concerted action on a global scale as governments around the world pledged today to increase funding for treatment, to fight discrimination, and to increase testing.
And in China, where up to 700,000 individuals are said to be infected but only 260,000 are officially recognized as having the disease, the fight against stigma is an uphill battle only newly begun.
The global effort is still in full swing, and it seems to receive a needed boost every year on December 1st. Thank you to all of the individuals and organizations that keep that torch burning year-round.
Showing posts with label AIDS. Show all posts
Showing posts with label AIDS. Show all posts
Monday, December 01, 2008
Wednesday, November 26, 2008
The Mathematics of HIV Infection
A new mathematical model suggests that the HIV virus could be virtually eliminated in 10 years if every person in every country with high infection rates was tested and treated.
Published in "The Lancet", the study is indeed intriguing, and the World Health Organization promises to examine the findings more closely. The model includes voluntary testing of every citizen, with AIDS drugs prescribed for any patient testing positive for the HIV virus, regardless of whether they are symptomatic or not. (Current practices often dictate withholding treatment until a patient has symptoms, or when their T-cells---immune cells that fight opportunistic infection---fall below a certain level.)
At this time, the price tag for such a strategy is estimated at $3.4 billion per year initially, with costs decreasing over time.
With approximately 33 million people infected with HIV worldwide, increased testing and treatment would, of course, cost money. However, an already overwhelmed healthcare infrastructure in places like sub-Saharan Africa (where HIV rates are still rising) would pose significant logistical challenges. (For an interesting map detailing the number of HIV cases and AIDS deaths worldwide, please click here.) How those countries would be financially and logistically supported by the global community in implementing such a strategy remains to be seen.
From a human rights perspective, critics of such an approach feel that universal testing and treatment might infringe on individual rights. And as many patients with HIV and AIDS already know, taking antiretrovirals is not easy, and side effects such as liver toxicity or failure, heart attacks and kidney failure are all relatively common.
Such studies and models for a plausible expansion of the global effort against HIV and AIDS are laudable, and perhaps the AIDS epidemic will indeed be significantly curtailed in the decades to come. Perhaps the greatest gift that we could give to the children of the 22nd century would be to eradicate HIV and AIDS from the face of the earth in the current century, a goal that has generally been seen as virtually impossible until now.
Some nay-sayers may feel that we're getting ahead of ourselves as infection rates steadily rise in Russia and other countries, but there are scientists and researchers around the globe seeing the possibilities of near-complete eradication. One can only hope that plausibility will eventually give way to reality, and someday we will truly look back on the epidemic as a disturbing yet finite piece of post-modern medical and societal history.
Published in "The Lancet", the study is indeed intriguing, and the World Health Organization promises to examine the findings more closely. The model includes voluntary testing of every citizen, with AIDS drugs prescribed for any patient testing positive for the HIV virus, regardless of whether they are symptomatic or not. (Current practices often dictate withholding treatment until a patient has symptoms, or when their T-cells---immune cells that fight opportunistic infection---fall below a certain level.)
At this time, the price tag for such a strategy is estimated at $3.4 billion per year initially, with costs decreasing over time.
With approximately 33 million people infected with HIV worldwide, increased testing and treatment would, of course, cost money. However, an already overwhelmed healthcare infrastructure in places like sub-Saharan Africa (where HIV rates are still rising) would pose significant logistical challenges. (For an interesting map detailing the number of HIV cases and AIDS deaths worldwide, please click here.) How those countries would be financially and logistically supported by the global community in implementing such a strategy remains to be seen.
From a human rights perspective, critics of such an approach feel that universal testing and treatment might infringe on individual rights. And as many patients with HIV and AIDS already know, taking antiretrovirals is not easy, and side effects such as liver toxicity or failure, heart attacks and kidney failure are all relatively common.
Such studies and models for a plausible expansion of the global effort against HIV and AIDS are laudable, and perhaps the AIDS epidemic will indeed be significantly curtailed in the decades to come. Perhaps the greatest gift that we could give to the children of the 22nd century would be to eradicate HIV and AIDS from the face of the earth in the current century, a goal that has generally been seen as virtually impossible until now.
Some nay-sayers may feel that we're getting ahead of ourselves as infection rates steadily rise in Russia and other countries, but there are scientists and researchers around the globe seeing the possibilities of near-complete eradication. One can only hope that plausibility will eventually give way to reality, and someday we will truly look back on the epidemic as a disturbing yet finite piece of post-modern medical and societal history.
Wednesday, June 27, 2007
National HIV Testing Day, June 27th
Today is National HIV Testing Day, originated by the National Association of People with AIDS-US (NAPWA-US) in 1995. The US Department of Health and Human Services offers this site in relation to today's events, and the CDC's information can be found here.
Outreach to communities of color and vulnerable populations like teenagers and the elderly is still central to the efforts to confront the pandemic's trajectory here in the United States. While HIV/AIDS is decimating populations in Sub-Saharan Africa, infection rates in the US are still unquestionably high. The popular notion that AIDS is now a chronic treatable illness has by some accounts emboldened certain segments of the population to engage in high-risk behaviors. Despite the fact that many antiretroviral drugs are available on the market---with some combination drugs in a once-a-day formulation---drug-resistant strains of HIV are quite prevalent and individuals can still fail treatment despite the most earnest attempts and latest technological and medical advances.
Teen centers, community centers, senior centers, clinics and schools all need to be on board vis-a-vis universal HIV testing in order to protect those not yet infected, and provide counseling and potential treatment to those already infected. Many estimates have been proposed in terms of the number of infected Americans who are unaware of their HIV-positive status. Those of us in positions of influence need to do our best to encourage and facilitate HIV testing wherever---and whenever---it can be done.
Outreach to communities of color and vulnerable populations like teenagers and the elderly is still central to the efforts to confront the pandemic's trajectory here in the United States. While HIV/AIDS is decimating populations in Sub-Saharan Africa, infection rates in the US are still unquestionably high. The popular notion that AIDS is now a chronic treatable illness has by some accounts emboldened certain segments of the population to engage in high-risk behaviors. Despite the fact that many antiretroviral drugs are available on the market---with some combination drugs in a once-a-day formulation---drug-resistant strains of HIV are quite prevalent and individuals can still fail treatment despite the most earnest attempts and latest technological and medical advances.
Teen centers, community centers, senior centers, clinics and schools all need to be on board vis-a-vis universal HIV testing in order to protect those not yet infected, and provide counseling and potential treatment to those already infected. Many estimates have been proposed in terms of the number of infected Americans who are unaware of their HIV-positive status. Those of us in positions of influence need to do our best to encourage and facilitate HIV testing wherever---and whenever---it can be done.
Tuesday, June 12, 2007
AIDS and Abstinence
Earlier this month, Senators Diane Feinstein and Olympia Snowe introduced a budget amendment which would end the limitations imposed by the Bush Administration on American funds used in the global fight against HIV/AIDS. The U.S. government's current rules stipulate that 33% of all funds for HIV/AIDS prevention be used for abstinence-before-marriage programs which the Government Accountability Office has shown to be a highly flawed approach, especially in developing countries. These limitations have curtailed local efforts to stem the tide of mother-to-child transmission, as well as efforts to protect blood supplies. It is also acknowledged that in some societies in the developing world, women have little or no ability to refuse sexual relations with men who hold the economic and cultural power in their communities. Abstinence-only programs do nothing to address these concerns and simply block needed funds from reaching the people who need them most. Thus, the Feinstien-Snowe measure will allow for "maximum flexibility" for those on the front lines to decide how these desperately needed funds will be spent. I strongly support the movement to jettison abstinence-only requirements which simply politicize the issue while imposing a moral paternalism which does little to protect anyone in the face of a growing pandemic.
Tuesday, May 01, 2007
AIDS and the Therapeutic Use of Self
At a recent professional talk on various aspects of HIV and AIDS, the presenter---a doctor who works with infected patients---disclosed early in his presentation that he himself has been infected since the early 1980's. He described how he shares his diagnosis with his patients, using his experience and understanding of the disease, its symptoms, and its treatments to relate empathically to his patients.
During the question-and-answer period, I asked the well-spoken doctor if he indeed discloses his status to every patient, or if he does so on a case-by-case basis. He responded that he generally discloses to every patient, with a few exceptions, and that the effect of such self-disclosure can be profound in terms of patients' ability to be forthright and honest with him about their challenges, doubts, and fears.
I asked him if he had done any writing about this very important experience as a doctor with AIDS, and he replied that it had crossed his mind but had yet to come to fruition. Encouraging him to do so, I reminded him that his very valuable insight into the lives of patients with HIV and AIDS was something no other medical professional could possibly match, and that his perspective would be a gift to patients and providers worldwide. He seemed to hear my suggestion and perhaps those words will take wing in his heart.
At one time or another, most healthcare professionals feel a desire to disclose a personal struggle to patients, often with the goal of helping a patient to see that the provider can personally relate to the patient's challenges. I have myself shared openly with some patients about my struggles with depression (when I am sure that that information will actually be helpful), and much more easily share my diagnoses of hyperlipidemia, reflux disease, and chronic pain. When a patient knows that the professional sitting across from him or her takes that same medication or experiences those same symptoms, the resulting mutual understanding can sometimes bridge a gap which otherwise would remain a yawning chasm of personal disconnection and clinical distance.
The healthcare professional must be circumspect in the practice of self-disclosure, use it with caution, and be absolutely certain that such sharing is being communicated strictly for the benefit of the patient, not for some unrecognized need of the provider for sympathy or credibility.
This doctor, I feel, has performed a service for his patients, demonstrating by his good health, attitude, and successful long-term survival with AIDS, that the term "chronic illness" can now be used as a descriptor for AIDS. As the good doctor stated, after 25 years of infection, he is now an "AIDS Geezer", more likely to die from heart disease than complications of AIDS. As the population of perinatally infected children with AIDS declines precipitously (in the industrialized world, at least), the number of elderly individuals living with the disease will continue to rise, creating a new sub-specialty area of AIDS Gerontology. The fact that infected people are now living for decades is a testament to the fact that scientific research, political will, and citizen activism have truly made strides of astronomical proportions possible.
I learned a lesson while listening to this gentleman speak, and that lesson of the judicious practice of the therapeutic use of self can have a far-reaching and profound effect on the lives of both patients and providers. I will not throw caution to the wind, however I will carefully consider how my carefully chosen disclosure may, at times, be a key to deeper understanding, and perhaps, improved clinical outcomes.
During the question-and-answer period, I asked the well-spoken doctor if he indeed discloses his status to every patient, or if he does so on a case-by-case basis. He responded that he generally discloses to every patient, with a few exceptions, and that the effect of such self-disclosure can be profound in terms of patients' ability to be forthright and honest with him about their challenges, doubts, and fears.
I asked him if he had done any writing about this very important experience as a doctor with AIDS, and he replied that it had crossed his mind but had yet to come to fruition. Encouraging him to do so, I reminded him that his very valuable insight into the lives of patients with HIV and AIDS was something no other medical professional could possibly match, and that his perspective would be a gift to patients and providers worldwide. He seemed to hear my suggestion and perhaps those words will take wing in his heart.
At one time or another, most healthcare professionals feel a desire to disclose a personal struggle to patients, often with the goal of helping a patient to see that the provider can personally relate to the patient's challenges. I have myself shared openly with some patients about my struggles with depression (when I am sure that that information will actually be helpful), and much more easily share my diagnoses of hyperlipidemia, reflux disease, and chronic pain. When a patient knows that the professional sitting across from him or her takes that same medication or experiences those same symptoms, the resulting mutual understanding can sometimes bridge a gap which otherwise would remain a yawning chasm of personal disconnection and clinical distance.
The healthcare professional must be circumspect in the practice of self-disclosure, use it with caution, and be absolutely certain that such sharing is being communicated strictly for the benefit of the patient, not for some unrecognized need of the provider for sympathy or credibility.
This doctor, I feel, has performed a service for his patients, demonstrating by his good health, attitude, and successful long-term survival with AIDS, that the term "chronic illness" can now be used as a descriptor for AIDS. As the good doctor stated, after 25 years of infection, he is now an "AIDS Geezer", more likely to die from heart disease than complications of AIDS. As the population of perinatally infected children with AIDS declines precipitously (in the industrialized world, at least), the number of elderly individuals living with the disease will continue to rise, creating a new sub-specialty area of AIDS Gerontology. The fact that infected people are now living for decades is a testament to the fact that scientific research, political will, and citizen activism have truly made strides of astronomical proportions possible.
I learned a lesson while listening to this gentleman speak, and that lesson of the judicious practice of the therapeutic use of self can have a far-reaching and profound effect on the lives of both patients and providers. I will not throw caution to the wind, however I will carefully consider how my carefully chosen disclosure may, at times, be a key to deeper understanding, and perhaps, improved clinical outcomes.
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.
"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.
Friday, March 23, 2007
Healthcare Disparities and Providers Who Care
It was incredibly refreshing and inspiring to attend an open house this evening for a new Infectious Disease (ID) practice in our city of employment. In the last 25 years, the role of the ID provider has greatly expanded, taking center stage in the fight against AIDS. This particular physician, having emigrated from Puerto Rico to attend medical and public health graduate school here in the US, was struck by the disparities being experienced by her own ethnic community. This realization led her to pursue a specialization in infectious diseases, taking up the gauntlet of HIV/AIDS treatment and the stemming of the waters engulfing the Latino community.
In her presentation, the director of this organization drove home the point that disparities in healthcare vis-a-vis the care of ethnic minorities is an area requiring the utmost attention and sensitivity.The centerpiece of the presentation, other than introducing her staff, revolved around the notion that the target population---mostly HIV- and Hepatitis C-infected low-income Latinos---need culturally competent and flexible healthcare which caters to their special needs and challenges, not only medically, but also within the psychosocial and socioeconomic realms.
Low-income patients face many challenges in terms of childcare, transportation, financial constraints, social stigma, as well as disempowerment and disenfrachisement from the society at large. Complex multi-generational family structures, chronic illness, and other challenges complicate the pursuit of care for diseases as complex as Hepatitis and AIDS, and this particular provider clearly stated that her practice strives to be flexible to the patients' life circumstances which may inhibit or challenge care. Flexible visit times, allowances for late arrivals, and asistance with transportation, childcare and other psychosocial issues all pay dividends in terms of the potential for successful treatment.
As we have learned in our practice, flexibility and understanding go a long way towards fostering positive relationships between provider and patient, and it is upon that foundation that successful treatment is achieved. If a patient does not feel seen, understood, and welcomed as they are, the ability to provide holistic and comprehensive treatment is immediately handicapped and may eventually backfire. It is clear that other practices are pursuing the same laudable goals to which we also aspire, and when I feel that another provider is singing my song and walking the same path, that is indeed a heartening experience which I do not take for granted.
In her presentation, the director of this organization drove home the point that disparities in healthcare vis-a-vis the care of ethnic minorities is an area requiring the utmost attention and sensitivity.The centerpiece of the presentation, other than introducing her staff, revolved around the notion that the target population---mostly HIV- and Hepatitis C-infected low-income Latinos---need culturally competent and flexible healthcare which caters to their special needs and challenges, not only medically, but also within the psychosocial and socioeconomic realms.
Low-income patients face many challenges in terms of childcare, transportation, financial constraints, social stigma, as well as disempowerment and disenfrachisement from the society at large. Complex multi-generational family structures, chronic illness, and other challenges complicate the pursuit of care for diseases as complex as Hepatitis and AIDS, and this particular provider clearly stated that her practice strives to be flexible to the patients' life circumstances which may inhibit or challenge care. Flexible visit times, allowances for late arrivals, and asistance with transportation, childcare and other psychosocial issues all pay dividends in terms of the potential for successful treatment.
As we have learned in our practice, flexibility and understanding go a long way towards fostering positive relationships between provider and patient, and it is upon that foundation that successful treatment is achieved. If a patient does not feel seen, understood, and welcomed as they are, the ability to provide holistic and comprehensive treatment is immediately handicapped and may eventually backfire. It is clear that other practices are pursuing the same laudable goals to which we also aspire, and when I feel that another provider is singing my song and walking the same path, that is indeed a heartening experience which I do not take for granted.
Thursday, March 01, 2007
When Shingles Strike
In Monday's post, I mentioned a patient who had shown up out of the blue at the clinic with lesions on his scalp which raised my suspicions and caused his doctor to allege the potential diagnosis of herpes zoster infection, or shingles. We sent him to the ER for evaluation, isolation, and empiric treatment with IV antivirals until we could be proven wrong. Well, the doctor was correct in her diagnosis, and my patient is currently in isolation receiving intravenous treatment for herpes zoster. Phew! Another close call.
For those of you who are not aware, shingles is caused by the same virus which causes chicken pox. After a child has chicken pox, the virus becomes dormant and lives in the nerve tracts, or ganglia, which emerge from the spine. The virus is usually reactivated by stress, aging, or an immunocompromised state such as AIDS. The lesions will often manifest along a "dermatome", an area of skin innervated by one nerve. The classic area for such an outbreak is the trunk, curving from the spine to the sternum in a narrow band, but lesions can appear on the face, neck, arms, even in the eye or mouth. Post-herpetic neuralgia can result, wherein the patient may have short- or long-term pain in the affected area, long after the lesions have healed and treatment ended. The pain can often be debilitating, especually in the elderly.
In my patient's case, he had relapsed into intravenous drug use, had disappeared from care, stopped all antiretrovirals and other meds, and his immune system has been weakening by the day. I knew that he would crash and burn, it was just a matter of when, how, and whether he would have the presence of mind to seek care before it was too late. In his very atypical zoster infection---disseminated zoster---the lesions are few and mostly hidden on the scalp. Untreated, he may eventually have developed lesions on his liver and kidneys, eventually succumbing to liver failure and a most unpleasant demise.
Even though I have a cold, I went to the hospital on my way home from an abbreviated workday today to visit him. Donning a mask in the hospital to not infect anyone else (and washing my hands frequently), I added my two cents to his chart, warning the team to please refrain from restarting the patient on AIDS medications while he's hospitalized. Knowing him well, I need to assess his readiness and eventually start him on meds when I think we have a chance at success, otherwise it's an exercise in futility and could further deplete his chances for future treatment due to his already multi-drug resistant HIV.
Since he is in respiratory isolation due to the ability to spread varicella via respiratory droplets, he was already acclimated to people wearing masks upon entering the room. I informed him that I had a cold and that I was wearing the mask as much for his protection from my cold as for my protection from his illness. He nodded and smiled, looking small in his bed.
"It's a good thing you came to see me on Monday. You know that this is a very dangerous illness for you." I sat down on the empty bed next to him.
"Yes, I do," he replied. "They explained everything."
"You know why you're in isolation?"
"Oh, yes. They told me that, too. I'll be here about ten days." He frowned.
"I want you to know that even though you relapsed and started using [cocaine] again, I'm not angry. It happens. But you have to get serious about treating your HIV. You've been off of meds for a while now."
"I know, I know," he replied gravely. "I just got so tired of all the pills. Then I started shooting up, and that was that."
"OK, but you were smart enough to come see me, and now you're here. You know that this could have killed you. What would your kids do? When you get out of here, we have some serious talking to do, my friend."
He smiled. Under different circumstances, we would have hugged, but we hugged with our eyes instead, the mask hiding my smile which I'm sure he could sense.
"I haven't abandoned you. If you do your half of the work, I'll do mine, OK?" I head for the door and wash my hands at the sink.
"You go home and rest," he says almost maternally. "We'll talk next week."
"OK," I reply. "I'll be thinking of you."
I exit the room, leaving my mask on until I leave the patient care area. Stopping in the men's room, I wash my hands and look at my bedraggled face in the mirror.
"At least he's safe in a bed and we know where he is," I think to myself. Now this nurse needs some rest as well, or I'll be of no further use to anyone.
For those of you who are not aware, shingles is caused by the same virus which causes chicken pox. After a child has chicken pox, the virus becomes dormant and lives in the nerve tracts, or ganglia, which emerge from the spine. The virus is usually reactivated by stress, aging, or an immunocompromised state such as AIDS. The lesions will often manifest along a "dermatome", an area of skin innervated by one nerve. The classic area for such an outbreak is the trunk, curving from the spine to the sternum in a narrow band, but lesions can appear on the face, neck, arms, even in the eye or mouth. Post-herpetic neuralgia can result, wherein the patient may have short- or long-term pain in the affected area, long after the lesions have healed and treatment ended. The pain can often be debilitating, especually in the elderly.
In my patient's case, he had relapsed into intravenous drug use, had disappeared from care, stopped all antiretrovirals and other meds, and his immune system has been weakening by the day. I knew that he would crash and burn, it was just a matter of when, how, and whether he would have the presence of mind to seek care before it was too late. In his very atypical zoster infection---disseminated zoster---the lesions are few and mostly hidden on the scalp. Untreated, he may eventually have developed lesions on his liver and kidneys, eventually succumbing to liver failure and a most unpleasant demise.
Even though I have a cold, I went to the hospital on my way home from an abbreviated workday today to visit him. Donning a mask in the hospital to not infect anyone else (and washing my hands frequently), I added my two cents to his chart, warning the team to please refrain from restarting the patient on AIDS medications while he's hospitalized. Knowing him well, I need to assess his readiness and eventually start him on meds when I think we have a chance at success, otherwise it's an exercise in futility and could further deplete his chances for future treatment due to his already multi-drug resistant HIV.
Since he is in respiratory isolation due to the ability to spread varicella via respiratory droplets, he was already acclimated to people wearing masks upon entering the room. I informed him that I had a cold and that I was wearing the mask as much for his protection from my cold as for my protection from his illness. He nodded and smiled, looking small in his bed.
"It's a good thing you came to see me on Monday. You know that this is a very dangerous illness for you." I sat down on the empty bed next to him.
"Yes, I do," he replied. "They explained everything."
"You know why you're in isolation?"
"Oh, yes. They told me that, too. I'll be here about ten days." He frowned.
"I want you to know that even though you relapsed and started using [cocaine] again, I'm not angry. It happens. But you have to get serious about treating your HIV. You've been off of meds for a while now."
"I know, I know," he replied gravely. "I just got so tired of all the pills. Then I started shooting up, and that was that."
"OK, but you were smart enough to come see me, and now you're here. You know that this could have killed you. What would your kids do? When you get out of here, we have some serious talking to do, my friend."
He smiled. Under different circumstances, we would have hugged, but we hugged with our eyes instead, the mask hiding my smile which I'm sure he could sense.
"I haven't abandoned you. If you do your half of the work, I'll do mine, OK?" I head for the door and wash my hands at the sink.
"You go home and rest," he says almost maternally. "We'll talk next week."
"OK," I reply. "I'll be thinking of you."
I exit the room, leaving my mask on until I leave the patient care area. Stopping in the men's room, I wash my hands and look at my bedraggled face in the mirror.
"At least he's safe in a bed and we know where he is," I think to myself. Now this nurse needs some rest as well, or I'll be of no further use to anyone.
Tuesday, January 09, 2007
New Year, New Life
He and his wife have had AIDS for years. Did they infect one another? I think so. At any rate, here they are with school-age children and a life to live. What to do?
She is a model patient, taking her meds religiously, showing up for appointments and labs, doing everything she can to succeed. Her work and diligent focus have paid off and her virus has been completely suppressed for years. Free of opportunistic infections and other complications, her HIV lingers in the background like controlled diabetes and hypertension---it's there, but there's little to worry about. Barring unforeseen circumstances or aberrations, she will be a member of this generation that dies of heart disease along with her non-HIV infected peers, Goddess willing.
On the other hand, her husband is far from the model patient. Having gone off and on his meds for years, he has basically "blown" a number of meds for himself forever, the virus in his body building resistant mutations to any number of combinations of medications. One or two entire classes of meds may now be out of the question for him, and the new classes of drugs are slow to make it onto the market. Having failed to take his current regimen of five drugs for almost two months, he landed himself in the hospital with pneumonia, although he miraculously avoided pneumocystis carinii pneumonia (PCP), the most lethal for people with HIV infection. Lucky for him, it was run-of-the-mill community-acquired pneumonia (CAP), and Levaquin, a popular and powerful antibiotic, will eradicate that bug in a flash.
So, four days out of the hospital, today was Check-Up Number One with his favorite Nurse Care Manager. Lungs were OK, although he has some intercostal pain between some ribs from the weeks of coughing. No fever, normal vital signs, weight surprisingly steady but well below his optimal goal: things look pretty good. While hospitalized, an HIV Genotype was drawn, so that in two weeks or less, we will have a list of the many mutations created by the particular brand of HIV virus inside of his body, helping us choose which meds might still be efficacious, if any. The news may be surprisingly bright, but could also be rather grim. Only time will tell.
Meanwhile, back in the exam room....
"It's the New Year, and I'm ready for a new life," he says. His skinny frame is racked by coughing and I wait for him to catch his breath.
"You know this is serious, right?" I ask in Spanish. "We've had this talk before and you were ready to go, but then you got lost and here we are again."
"It's not like before," he says while looking down. "This time I'm going to do it. I have to."
"Well," I say in response, "that's great, but it will take alot more talking before we make any decisions about medications." I look at his wife, and she's nodding knowingly.
"Look," I add, "you cannot be having unprotected sex---not now, not ever. You could pass your HIV mutations on to her, and then you'll both be in trouble. She's in great condition---let's keep it that way."
"Yes, yes," they both say. "We need condoms."
"That's what I want to hear. I'll give them to you before you go." I close down the computer after I finish entering the vital signs and a brief note.
I walk down the hall next to his wife and he lags behind, as usual, winded and tired.
"What do you think? Is he serious?" I ask.
"I think so," she replies. "He says the New Year is his time to start again."
"I hope so," I say as I open the door for her.
"A million thanks," she says as she grabs my hand.
"My pleasure." I squeeze her hand and then shake his, as well.
"I want to see you every week---don't disappear!" I say to his back.
"Don't worry," he yells back. "We'll see you."
I smile as I open the door and head back towards the office. I think about their kids, one a teenager and the others some years younger. Do they know their parents' diagnoses? How much have they surmised? Do they know how their father's been playing Russian Roullette with his life?
I can't do all the work. The patient has to meet me half-way. Some do, some don't, others do for a while but lose their focus. If they only realized how easy we make it, what an embarrassment of riches is at their disposal in terms of the system set up to help them succeed. We've lost so many, and continue to do so. Will this couple both live long enough to tend to one another as old age sets in? Can they be one couple of their generation that survives that long, intact and relatively unscathed and unwidowed? As for the wife, I put my money on her living to be quite old, with grandchildren to coddle and grown children to enjoy. And for the husband? My jury is out, but the track record does not bode well. Still, I hold out hope as this New Year gets underway.
New Year, new life? Let's hope so.
She is a model patient, taking her meds religiously, showing up for appointments and labs, doing everything she can to succeed. Her work and diligent focus have paid off and her virus has been completely suppressed for years. Free of opportunistic infections and other complications, her HIV lingers in the background like controlled diabetes and hypertension---it's there, but there's little to worry about. Barring unforeseen circumstances or aberrations, she will be a member of this generation that dies of heart disease along with her non-HIV infected peers, Goddess willing.
On the other hand, her husband is far from the model patient. Having gone off and on his meds for years, he has basically "blown" a number of meds for himself forever, the virus in his body building resistant mutations to any number of combinations of medications. One or two entire classes of meds may now be out of the question for him, and the new classes of drugs are slow to make it onto the market. Having failed to take his current regimen of five drugs for almost two months, he landed himself in the hospital with pneumonia, although he miraculously avoided pneumocystis carinii pneumonia (PCP), the most lethal for people with HIV infection. Lucky for him, it was run-of-the-mill community-acquired pneumonia (CAP), and Levaquin, a popular and powerful antibiotic, will eradicate that bug in a flash.
So, four days out of the hospital, today was Check-Up Number One with his favorite Nurse Care Manager. Lungs were OK, although he has some intercostal pain between some ribs from the weeks of coughing. No fever, normal vital signs, weight surprisingly steady but well below his optimal goal: things look pretty good. While hospitalized, an HIV Genotype was drawn, so that in two weeks or less, we will have a list of the many mutations created by the particular brand of HIV virus inside of his body, helping us choose which meds might still be efficacious, if any. The news may be surprisingly bright, but could also be rather grim. Only time will tell.
Meanwhile, back in the exam room....
"It's the New Year, and I'm ready for a new life," he says. His skinny frame is racked by coughing and I wait for him to catch his breath.
"You know this is serious, right?" I ask in Spanish. "We've had this talk before and you were ready to go, but then you got lost and here we are again."
"It's not like before," he says while looking down. "This time I'm going to do it. I have to."
"Well," I say in response, "that's great, but it will take alot more talking before we make any decisions about medications." I look at his wife, and she's nodding knowingly.
"Look," I add, "you cannot be having unprotected sex---not now, not ever. You could pass your HIV mutations on to her, and then you'll both be in trouble. She's in great condition---let's keep it that way."
"Yes, yes," they both say. "We need condoms."
"That's what I want to hear. I'll give them to you before you go." I close down the computer after I finish entering the vital signs and a brief note.
I walk down the hall next to his wife and he lags behind, as usual, winded and tired.
"What do you think? Is he serious?" I ask.
"I think so," she replies. "He says the New Year is his time to start again."
"I hope so," I say as I open the door for her.
"A million thanks," she says as she grabs my hand.
"My pleasure." I squeeze her hand and then shake his, as well.
"I want to see you every week---don't disappear!" I say to his back.
"Don't worry," he yells back. "We'll see you."
I smile as I open the door and head back towards the office. I think about their kids, one a teenager and the others some years younger. Do they know their parents' diagnoses? How much have they surmised? Do they know how their father's been playing Russian Roullette with his life?
I can't do all the work. The patient has to meet me half-way. Some do, some don't, others do for a while but lose their focus. If they only realized how easy we make it, what an embarrassment of riches is at their disposal in terms of the system set up to help them succeed. We've lost so many, and continue to do so. Will this couple both live long enough to tend to one another as old age sets in? Can they be one couple of their generation that survives that long, intact and relatively unscathed and unwidowed? As for the wife, I put my money on her living to be quite old, with grandchildren to coddle and grown children to enjoy. And for the husband? My jury is out, but the track record does not bode well. Still, I hold out hope as this New Year gets underway.
New Year, new life? Let's hope so.
Sunday, December 10, 2006
Illness as Metaphor
Browsing through an eclectic used bookstore recently, I came upon a copy of Susan Sontag's small but mighty "Illness as Metaphor", published in 1978. Sontag uses her wisdom and literary talent to expose and debunk the myths which blamed the victims of tuberculosis (in the 19th century) and cancer (in the 20th century) for their own conditions, often exacerbating their suffering by propagating myths which have the power to discourage rational thinking and the pursuit of the best treatments for disease. Although I fully embrace the idea of the mind-body connection, certain writers, thinkers, public institutions and media sources have often used fear, ignorance, and outright bigotry to hold sufferers of certain diseases at arm's length, rendered single-handedly responsible for their plight. Fear of death will turn humans away from their suffering brethren, and Sontag points out that TB and cancer were hallmark cases in such treatment and myth-making.
Making my way through the first few chapters, I immediately began to wonder how this idea has been treated by writers and thinkers vis-a-vis the AIDS epidemic. A quick Google search revealed that, lo and behold, Sontag had revisited the ideas of her original book in a follow-up treatise, "AIDS and its Metaphors", published in 2001, which I am now very keen to read.
Although I have yet to finish the former work of Ms. Sontag and am as yet uncertain if I will agree with 100% of her thesis, I can immediately agree that language has been frequently used as a weapon against the sufferers of myriad diseases. I am sure Ms. Sontag will address in her second work the notion that AIDS began in the early 1980's as a "gay" disease, with large numbers of gay men in urban centers falling prey to a strange "gay cancer" erupting on the skin like so many bruises. The long-esgtablished marginalization and social isolation of the gay community allowed mainstream America to ignore its importance, many claiming that AIDS was a punishment by God visited upon the "wicked" homosexuals and their "unnatural"ways. Photographs of early protests even show evangelicals holding signs using the word "gay" as an acronym for "Got AIDS Yet?" or "God Abhors You."
Words are powerful, and even those of us with the best intentions may at times use them to the detriment of others. In my position, it is all too easy to fall into blaming those affected by substance abuse, eschewing the disease model and embracing the notion that these individuals are wholly responsible for their actions and should know better. Life experience alone will convince most thinking individuals that substance abuse and the suffering it engenders goes well beyond a simple "personality flaw" of the sufferer. Similarly, depression---experienced by millions of people around the world---responds quite poorly to admonitions that one should simply "get over it" and "cheer up". Research bears out that substance abuse and mental illness have genetic, physiological, psychological, and chemical components over which we do not have complete control. Exasperation with a recalcitrant substance abuser is one thing---outright blame is another.
AIDS, cancer, substance abuse, disfigurement, disability---any and all of these conditions can cause the uninitiated or ignorant to turn their faces in disgust or denial, the common denominator being fear. Fear of death, fear of mortality, fear of the unknown, fear of the "other"---our fears will often prevent us from looking another in the eye and see their suffering as if it were our own.
Each day is an invitation to open ourselves to the suffering of others, and each time we embrace that opportunity, we further the causes of compassion and love. As Mother Teresa once said in one of my favorite quotes of all time, "I have found the paradox that if I love until it hurts, then there is no hurt, only more love."
Making my way through the first few chapters, I immediately began to wonder how this idea has been treated by writers and thinkers vis-a-vis the AIDS epidemic. A quick Google search revealed that, lo and behold, Sontag had revisited the ideas of her original book in a follow-up treatise, "AIDS and its Metaphors", published in 2001, which I am now very keen to read.
Although I have yet to finish the former work of Ms. Sontag and am as yet uncertain if I will agree with 100% of her thesis, I can immediately agree that language has been frequently used as a weapon against the sufferers of myriad diseases. I am sure Ms. Sontag will address in her second work the notion that AIDS began in the early 1980's as a "gay" disease, with large numbers of gay men in urban centers falling prey to a strange "gay cancer" erupting on the skin like so many bruises. The long-esgtablished marginalization and social isolation of the gay community allowed mainstream America to ignore its importance, many claiming that AIDS was a punishment by God visited upon the "wicked" homosexuals and their "unnatural"ways. Photographs of early protests even show evangelicals holding signs using the word "gay" as an acronym for "Got AIDS Yet?" or "God Abhors You."
Words are powerful, and even those of us with the best intentions may at times use them to the detriment of others. In my position, it is all too easy to fall into blaming those affected by substance abuse, eschewing the disease model and embracing the notion that these individuals are wholly responsible for their actions and should know better. Life experience alone will convince most thinking individuals that substance abuse and the suffering it engenders goes well beyond a simple "personality flaw" of the sufferer. Similarly, depression---experienced by millions of people around the world---responds quite poorly to admonitions that one should simply "get over it" and "cheer up". Research bears out that substance abuse and mental illness have genetic, physiological, psychological, and chemical components over which we do not have complete control. Exasperation with a recalcitrant substance abuser is one thing---outright blame is another.
AIDS, cancer, substance abuse, disfigurement, disability---any and all of these conditions can cause the uninitiated or ignorant to turn their faces in disgust or denial, the common denominator being fear. Fear of death, fear of mortality, fear of the unknown, fear of the "other"---our fears will often prevent us from looking another in the eye and see their suffering as if it were our own.
Each day is an invitation to open ourselves to the suffering of others, and each time we embrace that opportunity, we further the causes of compassion and love. As Mother Teresa once said in one of my favorite quotes of all time, "I have found the paradox that if I love until it hurts, then there is no hurt, only more love."
Tuesday, December 05, 2006
Bang Head Here
In yesterday's post, I wrote of a patient with dementia who is driving me to repeatedly connect my forehead with the nearest wall. Today, my bruised forehead is crying, "Uncle!"
As I described last night, my patient eventually arrived to the hospital after much hemming and hawing. He reportedly made it through the night---with some complaining--after undergoing some bloodwork, a chest x-ray and a CT-scan of the head. This morning, I arrived at the hospital with my Nurse Practitioner colleague and we read through the patient's chart. He was not in his bed, and we assumed that he was downstairs for his brain MRI and lumbar puncture. I noticed some discrepancies in the chart, left a note with my cell-phone number, and we were on our way.
Two hours later I receive a call that said patient actually left the hospital---without a word to anyone---in a cab this morning in the company of his son who had spent the night with his father in the room. That was the first strike of the ol' forehead against the wall. I was then informed that he would lose the bed entirely if he did not return immediately. They had not deemed him a "flight risk" and the examining doc found him "competent". "How could he be competent when he thinks he bought a plane in Puerto Rico yesterday?" I retorted. There was stunned silence on the other end of the line. I banged my forehead again. Harder.
I began to work the phones. No answer at the home phone but I managed to reach the patient himself on his nephew's cell. To wit:
"Where are you? You're supposed to be in the hospital."
"I had to come home. I was going to lose my apartment, and the plane that I bought in Puerto Rico."
"You aren't well, and you have to come back now. Put your wife on, please." I tried to be patient, I really did.
"Hello?" said his wife.
"Why isn't he in the hospital? He's not well. You can't let him make decisions like this."
"I don't know what to tell you," she replied.
"Well, I'll just tell you that he needs to be back at the hospital immediately."
"OK, we'll go now."
I continue with my day, paging the attending doctor that he is on his way back to the hospital and they should hold the room. I call the Infectious Disease doc who deemed him competent and I suggest a real psych evaluation for competency and a sitter in the room for the duration. I also point out discrepanices I noted on the inpatient med list.
An hour passes. And another. My forehead begins to feel better.
My cell phone rings. It's the Infectious Disease doc.
"Keith, I'm afraid I have bad news."
I prepare my forehead for further abuse.
"He came back to the floor, and we told him to settle in his room. He asked if he could go out to smoke, and the charge nurse told him he'd have to wait 30 minutes until everything was in order. When she returned to the room, he was gone. That was an hour ago."
I put the call on hold, brace my hands against the wall, and continue making a lovely dent in the sheetrock wall next to my desk. There's probably chips of paint stuck to my forehead by now. Should I switch to a filing cabinet?
I call the patient again, and the family is at a loss as to why he left again, who was with him, and why they allowed this demented person who thinks he owns a plane in San Juan to leave the hospital. I explain that his chest x-ray was abnormal, he needs a brain MRI, a CT scan of the chest, a lumbar puncture, and his serum ammonia level is high, dangerously so.
"We'll bring him to the clinic tomorrow" is all they say.
"OK, that will have to do." I finally give in. What more can I do?
"He must come in tomorrow to see our infectious disease specialist---no excuses." I hang up the phone.
Oh, my aching head. Maybe I should switch to meditation and abdominal breathing. But the feeling when my head hits that wall is just so satisfying........
As I described last night, my patient eventually arrived to the hospital after much hemming and hawing. He reportedly made it through the night---with some complaining--after undergoing some bloodwork, a chest x-ray and a CT-scan of the head. This morning, I arrived at the hospital with my Nurse Practitioner colleague and we read through the patient's chart. He was not in his bed, and we assumed that he was downstairs for his brain MRI and lumbar puncture. I noticed some discrepancies in the chart, left a note with my cell-phone number, and we were on our way.
Two hours later I receive a call that said patient actually left the hospital---without a word to anyone---in a cab this morning in the company of his son who had spent the night with his father in the room. That was the first strike of the ol' forehead against the wall. I was then informed that he would lose the bed entirely if he did not return immediately. They had not deemed him a "flight risk" and the examining doc found him "competent". "How could he be competent when he thinks he bought a plane in Puerto Rico yesterday?" I retorted. There was stunned silence on the other end of the line. I banged my forehead again. Harder.
I began to work the phones. No answer at the home phone but I managed to reach the patient himself on his nephew's cell. To wit:
"Where are you? You're supposed to be in the hospital."
"I had to come home. I was going to lose my apartment, and the plane that I bought in Puerto Rico."
"You aren't well, and you have to come back now. Put your wife on, please." I tried to be patient, I really did.
"Hello?" said his wife.
"Why isn't he in the hospital? He's not well. You can't let him make decisions like this."
"I don't know what to tell you," she replied.
"Well, I'll just tell you that he needs to be back at the hospital immediately."
"OK, we'll go now."
I continue with my day, paging the attending doctor that he is on his way back to the hospital and they should hold the room. I call the Infectious Disease doc who deemed him competent and I suggest a real psych evaluation for competency and a sitter in the room for the duration. I also point out discrepanices I noted on the inpatient med list.
An hour passes. And another. My forehead begins to feel better.
My cell phone rings. It's the Infectious Disease doc.
"Keith, I'm afraid I have bad news."
I prepare my forehead for further abuse.
"He came back to the floor, and we told him to settle in his room. He asked if he could go out to smoke, and the charge nurse told him he'd have to wait 30 minutes until everything was in order. When she returned to the room, he was gone. That was an hour ago."
I put the call on hold, brace my hands against the wall, and continue making a lovely dent in the sheetrock wall next to my desk. There's probably chips of paint stuck to my forehead by now. Should I switch to a filing cabinet?
I call the patient again, and the family is at a loss as to why he left again, who was with him, and why they allowed this demented person who thinks he owns a plane in San Juan to leave the hospital. I explain that his chest x-ray was abnormal, he needs a brain MRI, a CT scan of the chest, a lumbar puncture, and his serum ammonia level is high, dangerously so.
"We'll bring him to the clinic tomorrow" is all they say.
"OK, that will have to do." I finally give in. What more can I do?
"He must come in tomorrow to see our infectious disease specialist---no excuses." I hang up the phone.
Oh, my aching head. Maybe I should switch to meditation and abdominal breathing. But the feeling when my head hits that wall is just so satisfying........
Monday, December 04, 2006
Consternation and Potatoes
Things seemed to be improving. I wrote of his situation recently and was encouraged by some signs of improvement reported by his wife and the visiting nurse. Now, things just seem to be going downhill.
A call from the visiting nurse today informs me that he is increasingly unsafe in the home, the family not really coping as would be desired, and the patient's health at risk. Nightmares, violent dreams, wandering through the house at night, smoking in bed---not very good signs, I fear.
So, many telephone calls later, and we manage a direct admission to the hospital without a trip to the emergency room. Not an easy task. The primary doctor pulled some strings and I received a harried call at 1pm that a bed was ready and the patient needed to get down there as soon as possible. I reached his wife, and she agreed to get him there within the hour.
Five hours later, I'm washing potatoes for dinner and my cell phone rings. The Caller ID shows me that it's the hospital. "Oh good," I think, "the admitting doc is calling me for my input." Maddeningly, it's the Admissions Department. The patient never showed and the bed will be given to the next patient forthwith.
I call my patient's family. "Oh, he's out with his nephew," is the response I receive from a rather blase family member. "Do you want his cell phone number?" The potatoes need cutting but I'm steaming mad.
One call to the aforementioned cell-phone yields the information that the patient wants to go "tomorrow". The nephew says, "He's tired."
"First of all," I said, "do you realize how much work went into getting this bed for your uncle? Second," I continued, "just this morning, he insisted that he bought a plane in Puerto Rico yesterday. Are you giving him control over when he goes to the hospital when he can't even feed himself and thinks he's in San Juan? Aren't you all even a little worried?"
"I'll have him there in forty minutes," he responds.
I resume preparing the potatoes and Mary comes home to see the look of consternation on my face. In some ways, it's no different than my patient who just didn't show up for her cholecystectomy and liver biopsy. "I was busy," she said when I called her, incredulous that she would no-show for surgery.
Sometimes I wonder what it is we're doing. Sometimes I wonder what my patients and their families are thinking. Sometimes I would like my forehead to make repeated contact with a nearby wall. Sometimes I wonder what it would be like to wash potatoes from 9 to 5.
At any rate, my hope is that by the time I post this missive, my demented patient is happily or unhappily ensconced in a safe hospital bed, and the grand neurological work-up can commence. Meanwhile, I'll get some needed sleep and leave the forehead banging for another day.
Small potatoes in the bigger picture? Sure, but at times like these, there's nothing like a blog when one needs to kvetch.
A call from the visiting nurse today informs me that he is increasingly unsafe in the home, the family not really coping as would be desired, and the patient's health at risk. Nightmares, violent dreams, wandering through the house at night, smoking in bed---not very good signs, I fear.
So, many telephone calls later, and we manage a direct admission to the hospital without a trip to the emergency room. Not an easy task. The primary doctor pulled some strings and I received a harried call at 1pm that a bed was ready and the patient needed to get down there as soon as possible. I reached his wife, and she agreed to get him there within the hour.
Five hours later, I'm washing potatoes for dinner and my cell phone rings. The Caller ID shows me that it's the hospital. "Oh good," I think, "the admitting doc is calling me for my input." Maddeningly, it's the Admissions Department. The patient never showed and the bed will be given to the next patient forthwith.
I call my patient's family. "Oh, he's out with his nephew," is the response I receive from a rather blase family member. "Do you want his cell phone number?" The potatoes need cutting but I'm steaming mad.
One call to the aforementioned cell-phone yields the information that the patient wants to go "tomorrow". The nephew says, "He's tired."
"First of all," I said, "do you realize how much work went into getting this bed for your uncle? Second," I continued, "just this morning, he insisted that he bought a plane in Puerto Rico yesterday. Are you giving him control over when he goes to the hospital when he can't even feed himself and thinks he's in San Juan? Aren't you all even a little worried?"
"I'll have him there in forty minutes," he responds.
I resume preparing the potatoes and Mary comes home to see the look of consternation on my face. In some ways, it's no different than my patient who just didn't show up for her cholecystectomy and liver biopsy. "I was busy," she said when I called her, incredulous that she would no-show for surgery.
Sometimes I wonder what it is we're doing. Sometimes I wonder what my patients and their families are thinking. Sometimes I would like my forehead to make repeated contact with a nearby wall. Sometimes I wonder what it would be like to wash potatoes from 9 to 5.
At any rate, my hope is that by the time I post this missive, my demented patient is happily or unhappily ensconced in a safe hospital bed, and the grand neurological work-up can commence. Meanwhile, I'll get some needed sleep and leave the forehead banging for another day.
Small potatoes in the bigger picture? Sure, but at times like these, there's nothing like a blog when one needs to kvetch.
Friday, December 01, 2006
World AIDS Day
At the clinic today, a slide show depicting dozens of people who have died in the last twenty years of battling AIDS in our neighborhood was the close of the day's work. Patients and staff gathered together over snacks, pizza, and soda, acknowledging the day, what it represents, how far we've come, and how far we still have to go. The fact that someone is infected every eight seconds is no comfort.
Just this afternoon, one of my itinerant patients surfaced. I have been trying to keep her on antiretrovirals for several years. I took over her case from a nurse practitioner who left our practice for a new life in the Southwest. When we discussed this woman, my colleague said, "She's a lost cause." Perhaps she was, but I took her at face value and invested in the relationship.
Several years earlier, my former colleague and the patient's primary doctor had visited this woman at home and said goodbye, the patient's liver finally giving out from the effects of AIDS meds, a common occurence for meds that can burn up the liver. For some reason, that ravaged organ decided to have another go at life, and she bounced back from the brink of death.
So here I was today, faced with this woman who has been on and off of crack and heroin, her school-age kids in and out of protective service, and her young adult daughter trying to hold it together for the family even as she struggles with mental illness and drug-addicted parents.
The focus of the brief visit was explaining that we would stop the antiretrovirals. "Why?" she asked. "I need those meds more than anything else!" I have explained to her countless times that it's better to stop the meds altogether than to take them poorly. She looked at me and nodded, but I registered her discontent. I handed her a seven-day medication box prefilled with everything but her antiretrovirals, and sent her and her daughter on their way, admonishing them that I expect a phone call in six days to schedule the next med prefill. "Gracias, Keith!" they yell on the way out the door.
As I watched the slide show, I imagined that I saw this particular woman's face flash across the screen as the background music swelled, Sarah McLachlan crooning "I will remember you." She may not be up on that screen this year, but eventually she'll be added to that lengthening roster of losses. Tears will be shed, and her children will be alone without her.
How many more lives are also on the brink in a similar manner? We'll save quite a few, but there are always those who we just can't keep afloat. That said, our lifeboat has plenty of room, and I'll keep pulling on those oars until I no longer can sustain the effort.
I will remember you.
Just this afternoon, one of my itinerant patients surfaced. I have been trying to keep her on antiretrovirals for several years. I took over her case from a nurse practitioner who left our practice for a new life in the Southwest. When we discussed this woman, my colleague said, "She's a lost cause." Perhaps she was, but I took her at face value and invested in the relationship.
Several years earlier, my former colleague and the patient's primary doctor had visited this woman at home and said goodbye, the patient's liver finally giving out from the effects of AIDS meds, a common occurence for meds that can burn up the liver. For some reason, that ravaged organ decided to have another go at life, and she bounced back from the brink of death.
So here I was today, faced with this woman who has been on and off of crack and heroin, her school-age kids in and out of protective service, and her young adult daughter trying to hold it together for the family even as she struggles with mental illness and drug-addicted parents.
The focus of the brief visit was explaining that we would stop the antiretrovirals. "Why?" she asked. "I need those meds more than anything else!" I have explained to her countless times that it's better to stop the meds altogether than to take them poorly. She looked at me and nodded, but I registered her discontent. I handed her a seven-day medication box prefilled with everything but her antiretrovirals, and sent her and her daughter on their way, admonishing them that I expect a phone call in six days to schedule the next med prefill. "Gracias, Keith!" they yell on the way out the door.
As I watched the slide show, I imagined that I saw this particular woman's face flash across the screen as the background music swelled, Sarah McLachlan crooning "I will remember you." She may not be up on that screen this year, but eventually she'll be added to that lengthening roster of losses. Tears will be shed, and her children will be alone without her.
How many more lives are also on the brink in a similar manner? We'll save quite a few, but there are always those who we just can't keep afloat. That said, our lifeboat has plenty of room, and I'll keep pulling on those oars until I no longer can sustain the effort.
I will remember you.
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.
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.
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.
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.
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