Article
A life of real sweetness Edna Buckle
The International Journal of Psychiatry in Medicine 2015, Vol. 49(2) 136–139 ß The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0091217415572103 ijp.sagepub.com
The date itself has long been seared into my brain: May 9th. It was the first day we all crowded into his hospital room; a cluster of eager white coats come to observe a rare condition. The attending pressed on this, shined light into that, and spoke opaquely about titers and samples while we took notes and watched. I was an oral and maxillofacial surgery intern in my first year fresh out of dental school. Even though it was only the beginning of my two months of internal medicine, I had already encountered many pages of my Harrison’s Internal Medicine textbook come to life: a metastatic pancreatic cancer patient, methicillin-resistant Staphylococcus aureus in the thigh of a heroin-addicted subcutaneous injector, and now a medical condition relegated to the ‘‘rare infections’’ section of the annals of medicine: cryptococcal meningitis. The patient listened to the chatter around his bed, scanning the wall above our heads with an empty look in his eyes. He was assigned to me purely by the numbers: I had the fewest patients and he was the newest admission. After rounds, I put together the information I had into the daily note: age, gender, presenting illness, vitals, recent labs, and summarized it all into a concise assessment and plan according to what was discussed with the attending. With my notes done, and without any acute issues among my other patients, I took some time out to research cryptococcal meningitis. According to UpToDate.com, cryptococcal meningitis, also known as disseminated cryptococcus neoformans mengoencephalitis, is an opportunistic fungal infection preying almost exclusively on immunocompromised patients. The initial symptoms are fairly general: fever, malaise, and headache. He probably thought he was coming down with something simple like a cold or a sinus infection. He only came into the emergency room when things had progressed to photophobia, ataxia, and vomiting, symptoms that warranted medical attention. A spinal tap in the emergency room yielded cloudy fluid, and cytology results sealed his fate: AIDS. He had been unaware of his HIV status before this visit. The more I read, the grimmer his situation: newly diagnosed HIV/AIDS, presenting symptoms of headache, nausea and anorexia, imbalance, blurred vision, a CD4 count of 11, viral load in the hundreds of thousands, terrible basic metabolic Oral and Maxillofacial Surgery, Howard University Hospital, Washington, DC, USA Corresponding author: Edna Buckle, 2458 Huntington Park Drive NW, Acworth, GA 30101, USA. Email: [email protected]
Buckle
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panel values, and the way he barely tracked motion with his eyes. He had a likely probability of succumbing to his illness. The bad news did not end with his diagnosis. As I read further about treatment, the gravity of the situation became clear. Infusion-related reactions, particularly vomiting, chills, and rigors, are common. Amphotericin B and flucytosine would likely ravage his liver and kidneys. If his organs remained viable, treatment would eventually include highly active antiretroviral therapy (HAART) with its possibility of immune reconstitution inflammatory syndrome (IRIS), which carried a significant morbidity and mortality in young patients with cryptococcal meningitis. If this illness did not kill him, then the treatment of choice would possibly finish him off. The precarious fragility of his situation filled me with deep sorrow, and I initially mourned for a living person that I hardly knew. I coped by maintaining a cool professionalism. I busied myself with doing a good thorough clinical examination every day. We started the antifungal medications and I asked all the right questions about how much he was eating and drinking, if he was nauseated or feverish, if his bowels had moved that morning, and recorded detailed answers in my daily notes. I made neat annotations in his chart as his lab values deteriorated, his intracranial pressures remained high, and his lumbar puncture headaches left him weeping silent tears after one dose, two doses, and three doses of intravenous dilaudid. He lay in bed day after day still listless, monosyllabic answers at best, seemingly resigned to an early grave. I was only too happy to escape his inert presence each day when rounds were over. Then one day, I was tired of mourning someone who was still alive. The sun was shining, and it was nearly summer time. The wind had carried with it the scent of flowers as I walked into the hospital, and I was in high spirits and eager to share the feeling. That day I walked into his room and just started a one-way conversation. I told him about how they were repainting the walls of the hospital, about how at this time of day the halls echoed with multiple patient televisions tuned to Maury Povich causing a cacophony of ‘‘You are NOT the daddy!’’ to erupt in unison. I talked about how my sister had just found out that she was pregnant and I was going to be an aunt for the first time and how I was eager to be the baby’s godmother. As I chattered on, I noticed that, although still silent, he had a real smile on his face. Encouraged, I grasped for something else to talk about and reached absentmindedly into my white coat pocket. I had forgotten about my latest obsession: Throwback Pepsi! with bold advertising that boasted, ‘‘Now Made with REAL Sugar!’’ I held the bottle out for him to take a look and asked him ‘‘If this is NOW made with REAL sugar, what in the world was it made with before?’’ And for the first time since admission, I saw my patient laugh. He finally started to talk. I learned that he had grown up in a large close-knit religious family, moved away when he was a teenager because he knew he was ‘‘different,’’ and had started exploring his sexuality. I learned that he was highly educated, with a full grasp of his illness and detailed knowledge of the medication running foul-smelling and yellow into his veins. I learned that he was scared of dying but more afraid of anyone in his personal life finding out about him. As we
138
The International Journal of Psychiatry in Medicine 49(2)
talked and joked, I finally started to see him as a person and not just a rare and possibly fatal illness. We opened up the Throwback Pepsi and made it a little party. I poured out some for him into a cup and I drank from the bottle. It was the first thing he had willingly ingested in days. In that room, chatting over sips of dark brown bubbling caffeine, and REAL Sugar!, I finally saw how I could help him heal. After that first conversation, the words flowed easily. I would stop by his room every day just to talk; sometimes sneaking in when I was supposed to be on my duty hours mandated day off. We discovered that we had a lot in common, from our respective backgrounds to foods that we enjoyed to how much we loved our families. I would coax him to take his oral potassium and magnesium supplements and take small walks around the hallways with me. Where coaxing failed, bribery won; he could never refuse a bottle of Throwback Pepsi. In time, I gained his trust. He gave me permission to contact his boyfriend and finally his sister. The day she came into the hospital breathless and weeping nearly broke my heart. He had been so afraid of her rejection that he had underestimated her deep love for her brother and her fear and worry when she had not heard from him for several weeks. It was a turning point in his hospital course. His lab values slowly normalized. His CSF fluid came back clear, and we finally started him on HAART therapy and watched for signs of IRIS. IRIS is what I liked to call ‘‘the rude awakening.’’ Antiretroviral therapy gives the body’s besieged and ravaged immune system the means to fight back against the many encroaching opportunistic infections. However, the initiation of HAART therapy paradoxically causes a worsening of preexisting infections. Subclinical infections that were going unchecked by the weak immune system are all suddenly unmasked by the host’s regained ability to mount an inflammatory response. And mount it does with a vengeance, sending in cellular defenses to attack with impunity. There is a particularly high risk of IRIS in patients with low CD4 counts, and the immune response is strongest in organs that are actively infected. In a patient with a neural infection, any acute inflammation of the brain could quickly lead to debilitation or death. It seemed like he stayed in a state of suspended animation for weeks: getting worse, then better, then worse again. The day finally came that not even a Throwback Pepsi could coax a smile out of him. He lay in bed looking just like he did when I first laid eyes on him: listless and defeated; monosyllabic answers to my questions. So I finally did what a health care provider is not supposed to do: I got angry. ‘‘You need to fight back! Set some goals because you are going to get out of this hospital and you are going to go back to your life, and I am going to have a long discharge note to dictate, so figure out something that you’re going to work toward because you are getting out of here on your two legs and not in a coffin!’’ The look on his face was pure shock. . .but the gleam in his eyes was back. Having had so many conversations with him over the course of several weeks, I knew that he was competitive and what he liked most in life was a challenge. The slow smile he gave said it all: challenge accepted.
Buckle
139
So we settled on simple, achievable goals, and toasted the occasion with Throwback Pepsi. Every day I would end my early morning rounds in his room, pressing on this and shining light into that while we reiterated his goals. And I watched as meal trays came back emptied, and he asked for protein shakes between meals. I watched as he took his first tentative steps alone outside of his hospital room holding onto the wall for balance. I watched as he walked several laps around the nurse’s station, intravenous pole in hand. The week before I was to finish my two-month rotation, we shared our last Throwback Pepsi, and I watched him pack up his belongings and walk out of the hospital. It took me nearly an hour to dictate his full discharge note, but it was worth every second. I left internal medicine and returned to my oral and maxillofacial surgery service. My days were filled with calming anxious patients, infections, and trauma; internal medicine with its chronic care and obscure diagnoses was long behind me. But every now and then I would see Throwback Pepsi with the screaming logo on the side: Now made with REAL Sugar! and I would wonder what had become of my patient. One day I was told I had a patient waiting to see me in our conference room. When I walked in the room, a strange man leapt from the chair and gave me a bear hug. He pulled back and I realized that it was the same face that I had seen nearly every day for seven straight weeks. But he was hardly recognizable: He had gained weight and filled out the gaunt hollows of his face. He was smiling, almost giddy with excitement, and his eyes sparkled. He was the picture of health. His family finally knew about his illness, and they supported him. His CD4 count was well over 500, and his viral load was now undetectable, achieving the goals we had set. It was as though a year had never passed. We talked and joked and parted ways with a hug. No need for celebratory Throwback Pepsi. What I learned is that Life and Living it, is in the end, what held real sweetness.
A life of real sweetness Edna Buckle
The International Journal of Psychiatry in Medicine 2015, Vol. 49(2) 136–139 ß The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0091217415572103 ijp.sagepub.com
The date itself has long been seared into my brain: May 9th. It was the first day we all crowded into his hospital room; a cluster of eager white coats come to observe a rare condition. The attending pressed on this, shined light into that, and spoke opaquely about titers and samples while we took notes and watched. I was an oral and maxillofacial surgery intern in my first year fresh out of dental school. Even though it was only the beginning of my two months of internal medicine, I had already encountered many pages of my Harrison’s Internal Medicine textbook come to life: a metastatic pancreatic cancer patient, methicillin-resistant Staphylococcus aureus in the thigh of a heroin-addicted subcutaneous injector, and now a medical condition relegated to the ‘‘rare infections’’ section of the annals of medicine: cryptococcal meningitis. The patient listened to the chatter around his bed, scanning the wall above our heads with an empty look in his eyes. He was assigned to me purely by the numbers: I had the fewest patients and he was the newest admission. After rounds, I put together the information I had into the daily note: age, gender, presenting illness, vitals, recent labs, and summarized it all into a concise assessment and plan according to what was discussed with the attending. With my notes done, and without any acute issues among my other patients, I took some time out to research cryptococcal meningitis. According to UpToDate.com, cryptococcal meningitis, also known as disseminated cryptococcus neoformans mengoencephalitis, is an opportunistic fungal infection preying almost exclusively on immunocompromised patients. The initial symptoms are fairly general: fever, malaise, and headache. He probably thought he was coming down with something simple like a cold or a sinus infection. He only came into the emergency room when things had progressed to photophobia, ataxia, and vomiting, symptoms that warranted medical attention. A spinal tap in the emergency room yielded cloudy fluid, and cytology results sealed his fate: AIDS. He had been unaware of his HIV status before this visit. The more I read, the grimmer his situation: newly diagnosed HIV/AIDS, presenting symptoms of headache, nausea and anorexia, imbalance, blurred vision, a CD4 count of 11, viral load in the hundreds of thousands, terrible basic metabolic Oral and Maxillofacial Surgery, Howard University Hospital, Washington, DC, USA Corresponding author: Edna Buckle, 2458 Huntington Park Drive NW, Acworth, GA 30101, USA. Email: [email protected]
Buckle
137
panel values, and the way he barely tracked motion with his eyes. He had a likely probability of succumbing to his illness. The bad news did not end with his diagnosis. As I read further about treatment, the gravity of the situation became clear. Infusion-related reactions, particularly vomiting, chills, and rigors, are common. Amphotericin B and flucytosine would likely ravage his liver and kidneys. If his organs remained viable, treatment would eventually include highly active antiretroviral therapy (HAART) with its possibility of immune reconstitution inflammatory syndrome (IRIS), which carried a significant morbidity and mortality in young patients with cryptococcal meningitis. If this illness did not kill him, then the treatment of choice would possibly finish him off. The precarious fragility of his situation filled me with deep sorrow, and I initially mourned for a living person that I hardly knew. I coped by maintaining a cool professionalism. I busied myself with doing a good thorough clinical examination every day. We started the antifungal medications and I asked all the right questions about how much he was eating and drinking, if he was nauseated or feverish, if his bowels had moved that morning, and recorded detailed answers in my daily notes. I made neat annotations in his chart as his lab values deteriorated, his intracranial pressures remained high, and his lumbar puncture headaches left him weeping silent tears after one dose, two doses, and three doses of intravenous dilaudid. He lay in bed day after day still listless, monosyllabic answers at best, seemingly resigned to an early grave. I was only too happy to escape his inert presence each day when rounds were over. Then one day, I was tired of mourning someone who was still alive. The sun was shining, and it was nearly summer time. The wind had carried with it the scent of flowers as I walked into the hospital, and I was in high spirits and eager to share the feeling. That day I walked into his room and just started a one-way conversation. I told him about how they were repainting the walls of the hospital, about how at this time of day the halls echoed with multiple patient televisions tuned to Maury Povich causing a cacophony of ‘‘You are NOT the daddy!’’ to erupt in unison. I talked about how my sister had just found out that she was pregnant and I was going to be an aunt for the first time and how I was eager to be the baby’s godmother. As I chattered on, I noticed that, although still silent, he had a real smile on his face. Encouraged, I grasped for something else to talk about and reached absentmindedly into my white coat pocket. I had forgotten about my latest obsession: Throwback Pepsi! with bold advertising that boasted, ‘‘Now Made with REAL Sugar!’’ I held the bottle out for him to take a look and asked him ‘‘If this is NOW made with REAL sugar, what in the world was it made with before?’’ And for the first time since admission, I saw my patient laugh. He finally started to talk. I learned that he had grown up in a large close-knit religious family, moved away when he was a teenager because he knew he was ‘‘different,’’ and had started exploring his sexuality. I learned that he was highly educated, with a full grasp of his illness and detailed knowledge of the medication running foul-smelling and yellow into his veins. I learned that he was scared of dying but more afraid of anyone in his personal life finding out about him. As we
138
The International Journal of Psychiatry in Medicine 49(2)
talked and joked, I finally started to see him as a person and not just a rare and possibly fatal illness. We opened up the Throwback Pepsi and made it a little party. I poured out some for him into a cup and I drank from the bottle. It was the first thing he had willingly ingested in days. In that room, chatting over sips of dark brown bubbling caffeine, and REAL Sugar!, I finally saw how I could help him heal. After that first conversation, the words flowed easily. I would stop by his room every day just to talk; sometimes sneaking in when I was supposed to be on my duty hours mandated day off. We discovered that we had a lot in common, from our respective backgrounds to foods that we enjoyed to how much we loved our families. I would coax him to take his oral potassium and magnesium supplements and take small walks around the hallways with me. Where coaxing failed, bribery won; he could never refuse a bottle of Throwback Pepsi. In time, I gained his trust. He gave me permission to contact his boyfriend and finally his sister. The day she came into the hospital breathless and weeping nearly broke my heart. He had been so afraid of her rejection that he had underestimated her deep love for her brother and her fear and worry when she had not heard from him for several weeks. It was a turning point in his hospital course. His lab values slowly normalized. His CSF fluid came back clear, and we finally started him on HAART therapy and watched for signs of IRIS. IRIS is what I liked to call ‘‘the rude awakening.’’ Antiretroviral therapy gives the body’s besieged and ravaged immune system the means to fight back against the many encroaching opportunistic infections. However, the initiation of HAART therapy paradoxically causes a worsening of preexisting infections. Subclinical infections that were going unchecked by the weak immune system are all suddenly unmasked by the host’s regained ability to mount an inflammatory response. And mount it does with a vengeance, sending in cellular defenses to attack with impunity. There is a particularly high risk of IRIS in patients with low CD4 counts, and the immune response is strongest in organs that are actively infected. In a patient with a neural infection, any acute inflammation of the brain could quickly lead to debilitation or death. It seemed like he stayed in a state of suspended animation for weeks: getting worse, then better, then worse again. The day finally came that not even a Throwback Pepsi could coax a smile out of him. He lay in bed looking just like he did when I first laid eyes on him: listless and defeated; monosyllabic answers to my questions. So I finally did what a health care provider is not supposed to do: I got angry. ‘‘You need to fight back! Set some goals because you are going to get out of this hospital and you are going to go back to your life, and I am going to have a long discharge note to dictate, so figure out something that you’re going to work toward because you are getting out of here on your two legs and not in a coffin!’’ The look on his face was pure shock. . .but the gleam in his eyes was back. Having had so many conversations with him over the course of several weeks, I knew that he was competitive and what he liked most in life was a challenge. The slow smile he gave said it all: challenge accepted.
Buckle
139
So we settled on simple, achievable goals, and toasted the occasion with Throwback Pepsi. Every day I would end my early morning rounds in his room, pressing on this and shining light into that while we reiterated his goals. And I watched as meal trays came back emptied, and he asked for protein shakes between meals. I watched as he took his first tentative steps alone outside of his hospital room holding onto the wall for balance. I watched as he walked several laps around the nurse’s station, intravenous pole in hand. The week before I was to finish my two-month rotation, we shared our last Throwback Pepsi, and I watched him pack up his belongings and walk out of the hospital. It took me nearly an hour to dictate his full discharge note, but it was worth every second. I left internal medicine and returned to my oral and maxillofacial surgery service. My days were filled with calming anxious patients, infections, and trauma; internal medicine with its chronic care and obscure diagnoses was long behind me. But every now and then I would see Throwback Pepsi with the screaming logo on the side: Now made with REAL Sugar! and I would wonder what had become of my patient. One day I was told I had a patient waiting to see me in our conference room. When I walked in the room, a strange man leapt from the chair and gave me a bear hug. He pulled back and I realized that it was the same face that I had seen nearly every day for seven straight weeks. But he was hardly recognizable: He had gained weight and filled out the gaunt hollows of his face. He was smiling, almost giddy with excitement, and his eyes sparkled. He was the picture of health. His family finally knew about his illness, and they supported him. His CD4 count was well over 500, and his viral load was now undetectable, achieving the goals we had set. It was as though a year had never passed. We talked and joked and parted ways with a hug. No need for celebratory Throwback Pepsi. What I learned is that Life and Living it, is in the end, what held real sweetness.
