Tuesday, April 21, 2015

offering hope

The most common question I get asked when I am seeing a patient who was just diagnosed with HIV in the emergency department is: am I going to die? 

Over and over, I offer reassurance: this is not a death sentence. 

Even to the sickest of patients, I still reassure: this isn't a death sentence. Throughout this year, I've seen people on the edge of death because of complications from undiagnosed HIV. They have severe pneumonia, brain infections, meningitis, or cancer. A handful have had single-digit T-cell counts (normal is around 1000; AIDS is less than 200), and they still manage to survive. 

Recently, a young man came to the emergency room with severe pneumonia like so many others I have seen this year. He was diagnosed with HIV in the emergency department. His T-cell count was 10. When I met him, he begged me to tell him that this wasn't a death sentence. I reassured him that even people with low T-cell counts can start treatment and live long healthy lives. Nothing suggested he might not survive. But things took a turn for the worse; he died a few days later. At age 38. Within 2 weeks of his HIV diagnosis. 

I felt terrible. Because I reassured him that this wasn't a death sentence. Because by itself, HIV isn't. Even with pneumonia like his, it almost always isn't. For him, it shouldn't have been. I hate when patients are given false hope. I felt like I had lied to him.   

Last week, another patient came in. Instead of pneumonia, he came in because he was confused and weak. In addition to being newly diagnosed with HIV, there was a huge mass in his brain. This time, I knew that the odds of his survival were probably low. Like everyone who finds out they have HIV, he begged me to tell him he isn't going to die. I struggled to find the words. We don't know yet exactly what is in your brain. It's probably cancer, and it's probably not good. But no matter what, we are going to be here and take care of you. He died eight days later. 

Most cases of HIV that are diagnosed in the emergency department are not this severe. Most are people who came to the emergency room for something minor: an abscess, a stomach bug, a cold. Because an HIV test is ordered for everyone, it is discovered. 

In these people who are otherwise well, I struggle with how to offer reassurance without minimizing the realities of living with HIV. Because it isn't a death sentence. Because there are amazing treatment options available. Because most people with HIV live long, healthy lives. Because most people with HIV in this country die from something other than HIV. But it still is a life-changing diagnosis, and those promises of health are contingent upon rigid adherence to a combination of medications. There are still losses to grieve. Life won't be the same. But just because life won't be the same doesn't mean it can't still be beautiful.   

Friday, March 20, 2015

healthcare privilege

The first time she stumbled into our clinic on Skid Row, she was on the brink of death. A huge wool coat hung over her 83-pound frame even though it was 90 degrees outside. Thrush crawled out the corners of her mouth and over her lips. She'd been in the ICU last month; she never finished the antibiotics for the AIDS-related pneumonia she had. Now her cough (and every other concerning symptom possible) was back: 
Her blood pressure was 86/40; there was no choice but to send her to the emergency room. We gave her a liter of IV fluids while waiting on the ambulance to come because we knew she might wait a while to see a doctor once she got to the hospital. The wait to be seen by a doctor at LA County Hospital can range anywhere from 8-36 hours. We hoped that sending her by ambulance might expedite things. Sadly, it was almost 24 hours before a doctor saw her, and 28 hours until the necessary chest x-ray was done. The previous pneumonia was still there, though slightly improved. She was released the following morning after a couple doses of IV antibiotics, back to the court yard on Skid Row where she slept. 

Martin Luther King, Jr. said, "Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane." These inequalities become more glaring when I find myself on the privileged side of healthcare. On the same campus where LA County Hospital sits, half a mile down the hill, is a smaller private hospital. Recently, I found myself having to access their services.

I was sent from my doctor's office to the hospital's equivalent of an emergency room. It was less than ten minutes from when I checked into the emergency department until a doctor saw me. Over the weekend when I felt worse, the on-call doctor sent me back to their emergency room. Within thirty minutes, IV fluids were running into my dried out veins. And two days later, when it was finally clear I had to be admitted, it took under an hour to transfer me from my doctor's office into my room. 

Beyond the speed and access to services, I carry additional privilege: speaking the same language as my doctors, having the knowledge to ask questions about my treatment, and being able to read the prescriptions I was sent home with (and a home to return to)

I struggle with this privilege. Because there is no reason my patient should wait 28 hours for a chest x-ray, when in that same amount of time, I made it to a room, saw the medicine team taking care of me twice, and watched 17 episodes of Friends on TBS. Though our country is trying to lessen these disparities with things like Obamacare and the expansion of Medicaid, we still have a long way to go until everyone has equal access to healthcare. Until then, I'll keep fighting for my patients to get the care they deserve. 

p.s. - in case you were wondering, my patient is doing great. She is now on HIV medicines, has gained 40 pounds, has been living in a medical-transitional housing unit, and will be getting her own place next month after 28 years of living on the streets. 
and i'm doing much better too. :) 

Monday, December 22, 2014

Christmas candles

The recent losses and outcries for justice in Ferguson and New York hit close to home because twice a week I work in the Los Angeles County jail, caring for men who were fortunate enough to survive their arrests. Most are young black men, who are arrested disproportionately compared with their counterparts of other races. 

I never ask my patients why they were arrested. 
Instead,I ask: what are your goals? 

The answers are humbling:
I'm taking classes so I can keep custody of my son. He's nine months now.
I want to have my own Christmas tree someday.
I'm gonna open my own accounting firm; I only need six more credits to finish my degree. 
I want to be a hairdresser. I have a lot of sisters; I'm really good at doing hair. 
I've never walked on the beach with my friend; I want to do that someday. 
So as Christmas comes, I light candles:
A candle in memory of the lives who have been lost. 
A candle for peace, that there would be racial healing and justice in this country. 
A candle of hope, that these men will get the chance to live out these dreams. 
Wishing you a new year filled with hope and peace. 

Tuesday, September 23, 2014

you can't give hugs in jail

First, some background: 
The LA County Jail is the largest jail system in the country (and possibly the world)It is made of up 9 different facilities that house 15,000-20,000 inmates at any given point in time. 

Men's Central Jail is one of these 9 facilities. It can house up to 5,000 inmates. It is located on the northeast edge of downtown Los Angeles. Five percent of the inmates in Men's Central Jail have known HIV. I work there 2 days each week providing HIV care.
To enter the jail wards, you have to go through a sallyport (aka cage) - where you enter through one gate, which closes behind you, then wait until the second gate opens into the ward. It's a little intimidating. 

I was given a couple pieces of advice for working in jail:
1. Wear pants. (Pants as opposed to my usual dresses. Not pants as opposed to nothing.)
2. If you get lost inside, don't wander. Just fall to the ground and start shaking. A security camera will eventually see you and send help. (I have yet to need this.)

One of my first patients was a young man who recently moved to LA (as always, details changed to protect privacy). He found out he had HIV a while ago but hadn't seen a doctor yet. Despite violence in his family growing up, he'd come far in life. He was credits away from bachelor's degree and had plans to open his own company. He was well-educated about HIV and what it meant when someone had progressed to AIDS. But that knowledge didn't prepare him for the fact that his infection had gone that far. So this beautiful boy, who I'd already invaded with personal questions and now broke crushing news to, started to cry. Because he hasn't lived a quarter of a century and already has AIDS. Because whatever hope led him to LA has been derailed by incarceration. Because his momma sits across the country and has no idea her son is in jail or that he has been living with HIV. 

In any other setting, I'd reach out and touch him - place a hand on his arm or pat his shoulder or offer a hug. But you can't give hugs in jail. So I willed my eyes to speak what I couldn't communicate with touch so he would know he is not alone. Over and over, I reassured him: this is not the end. things can get better. you can get better. 

He was released the next day. He knows where to find the clinic where I work. I hope he comes. I owe him a hug.  

Friday, September 12, 2014

taking in stories

It's crazy to think it's been more than a month already. There is a lot of HIV in LA. I have spent a lot of time listening. I have taken in a lot of stories.
(billboard on my drive home each day)

The stories start to run together. It's not that they are the same - it's just that there are so many:

A woman who was diagnosed while she was pregnant. She told her oldest child but still doesn't know how to tell the young ones. 

A father who didn't want to spread his cough to his baby girl, so he came to the ER to get checked. Now he asks if it's safe to hug her ever again. (yes, it is.)

A woman who was raped while she was crossing the border. Her child and family are still in Central America; she hasn't told them what happened. 

A grandmother who needed a blood transfusion years ago. 
A traveler from Europe who felt sick during his vacation.
A rapper with big dreams who ended up homeless and addicted to drugs.

People who have fought HIV for years, and people who found out only minutes ago. 
People in good relationships and bad ones. 
People who sleep on the streets and people who live in mansions.
People who laugh and cry and fight for life with a resilience I'll never know. 
A lot of the time, the sorrow of these stories is overwhelming. And despite huge advances in medicine, having HIV is difficult - whether it is the hurt or shame of how it was acquired, or the discrimination that those with HIV still face, or isolation from family, or struggling to break free from the addiction that led to becoming infected, or being unable to work due to illness, or simply having to remember to take medicine every day from now on. I'm still figuring out how to take it all in, how to keep listening, how to keep offering hope. 

"Compassion asks us to go where it hurts, 
to enter into the places of pain, 
to share in brokenness, fear, confusion, and anguish." 
-Henri Nouwen

Monday, August 18, 2014

new job, new pager

I started being on-call for the emergency department this weekend. LA County Hospital(LAC+USC) has a HUGE emergency department. I am told they see 180,000 patients each year (compare to Allegheny General Hospital ED which sees 38,000 patients per year, and Temple that sees 130,000 per year). The wait to be seen ranges from 12-36 hours.
Every patient who comes into the ED receives HIV testing (unless they opt out). When someone is newly found to have HIV, I get called to go talk with the person. Sometimes this involves telling them their diagnosis if no one has told them already; mostly it involves talking about what that diagnosis means and connecting them with our clinic. I think I am a bad luck charm becaues I was called about 4 new patients in the first 24 hours.

Not everyone comes in suspecting that they have HIV; in fact, most don't. They come in with coughs and headaches that have gone on too long, only to find the underlying thing causing their symptoms is not only HIV but AIDS.

My first patient (details changed to protect privacy) was younger than me, but life had been unfair. He'd been living on the streets, earning money however he could - even if that meant doing things he didn't want to do. Drugs made doing these things easier. He suspected for a while that he might have HIV, but couldn't find the courage to be tested until now. After 20 hours of waiting, he had his answer. So at 5am, we sat and talked in a quiet corner of the chronically-overcrowded ED. He spilled out stories of his life; of trauma; of how he wants to live now. We scheduled an appointment at our clinic. He'll start treatment. He'll probably be fine. Or at least his HIV will. Most of what he carries, I can't fix. But I can keep hoping for him.  
(view of downtown LA from LAC+USC)

Saturday, July 26, 2014

the i-don't-knows

i have answered "i don't know" no less than 286 times this month when asked details about moving.

some have been logistical questions that finally have answers:
where will you be living?
monterey hills (east of downtown LA)
have you packed?
finally, yes.
what will you be doing?
it's an HIV corrections fellowship.
i'll be at LA County Hospital's HIV clinic, the LA county jail, and a clinic on Skid Row.
yes, Skid Row is a real place.
yes, I said the jail.
yes, my mom is nervous.
will you miss pittsburgh?

a lot of questions are more complex, and i don't have answers. i have no idea what to expect. i don't know what it will be like working in a jail. i don't know what my patients will be like or how i will fill my days. i know data and statistics about hiv and jail and homelessness, but i don't know anyone's stories yet so i feel at a loss.

the good news is, i've done a lot of things before where i haven't known anything other than facts:

i moved to swaziland knowing only the perinatal hiv rate (42.6%) and the number of orphans (100,000 of a national population of one million). what i found were amazing friends like zandi and jabu who taught me what it is to hope.

i worked in alaska for a month at a native alaskan hospital. i knew rates of alcoholism and domestic violence were horribly high, but it wasn't until bruised women shared with me their stories did i start to understand.

so now i start this next adventure with all of my not-knowing, and am waiting for the stories to begin.

"instructions for living a life:
pay attention.
be astonished.
tell about it."
-mary oliver