Ellen

I graduated nursing school in May of 1978, took my nursing boards right away and passed. I was a Registered Nurse, ready to go out into the world and help people. That is what we all said in nursing school, we were told about the “real world” or “reality check” you get after nursing school, but you never get prepared for what the job really entails. I interviewed at several hospitals, all of which were looking for “experienced RNs”. Members of my graduating class were meeting the same obstacles. I was offered a per diem position at a hospital in Queens. Of course, I took it. I was to start July 10, 1978. Before I started I got two letters in the mail, one firing me from a per diem spot and the other hiring me for a full- time position. I had no idea what that meant. Did I have a job, or didn’t I? Some of my fellow graduates that were hired at that same hospital got the same 2 letters. Someone found out that they were creating a new kind of unit within the hospital and were staffing it with us. My friends, Gloria and Iris were starting with me and we were assigned a unit to work on I had A7, female medicine, Gloria had B7, male medicine, and Iris had B2 neurology. My initial starting salary was just over $7.00/hour. On each of these floors they were developing what they called a CONCENTRATED CARE AREA, which was a room that held 6 patients that would be either overflow from the ICU or transfers from the ICU, so in other words, too sick for the general floor but not quite sick enough for the ICU. This sounded great! I was to work the 3pm to 11pm shift 5 days a week with every other weekend off. At this time, I was living with a roommate, and she decided to volunteer on the weekend when I worked. I was thankful to have her as I would find out later, she was frequently the only help I had. We were given a critical care course and released to the units. They hadn’t been quite constructed yet for these sicker patients; there was wall oxygen on only one side of the room, no wall suction machines or wall mounted monitors. But what did I know? I was happy to be working. The room was to be staffed with 2 nurses for 6 patients. The units got full right away, but problems soon occurred. If you had a patient that needed oxygen and they were on the wrong side of the room, we had to move the beds so the one that didn’t require oxygen was placed on the non- oxygen side. Ahh, simple enough I thought. Only what happened when more than 3 patients needed oxygen? Well then someone had to bring a large cylinder of oxygen (probably about the 5 feet tall and 2 feet in circumference) which made getting to the bedside a bit rough, but again I was new, and it was all cool stuff. Then came the sicker patients that the ICU had no room for. They were on ventilators and on the wrong side of the room! So now we had the ventilator, the monitor (about the size of a 36” TV screen, the suction machine and the large green oxygen tank, and there was really no way to get near the patient. So, we sucked in our guts and twisted and turned to ease ourselves to the bedside to give medications, change linens, do assessments and so on. Sometimes the configuration of the machinery was such that the only way to fit the monitor in was to face it out the window, so I couldn’t see it anyway. The other problem was that the medications, on a cart, were in a separate room so we had to leave these “critical patients” to go outside and down the hallway to get the medications. On the cart were bottles of pills, including valium, Tylenol with codeine, chloral hydrate (an old sleeping medication) as well as the usual assortment of medications like Lasix (a diuretic) and digoxin (for the heart rate). I always wondered why I had to call the pharmacy for refills on the valium and Tylenol with codeine containers. I was often told by the pharmacist “we just sent that up yesterday” I was so naïve. Sometimes, we were called to float to another Concentrated Care Area if there was a sick call. B2, the neurology unit was entirely different. Every patient there had some sort of traumatic brain injury, was on a ventilator and had a feeding tube. In the late 1970’s there were no blenderized “tube feedings” so the patients were given a regular tray with eggs, a roll, milk, farina for breakfast, lunch and dinner was pureed type meat vegetables, potatoes etc. there was an actual blender in the room where we were supposed to blenderize the food ourselves to push down the feeding tube. This proved to be quite the impossible task, as I first put the eggs, then the roll, then the cereal and milk made a “breakfast smoothie” and tried to get it down the tube which inevitably got clogged. After hours, I had only fed 1 maybe 2 patients. I thought this was insane. Later a veteran nurse said to me: “Are you crazy?” just put the liquids down and throw the other stuff out. I was dumbfounded!  I thought, so this is how they manage! Another reality check! So as the months rolled by, the patients became sicker and one by one the staff that started there when I did, left for jobs in the city. They didn’t replace the positions, so we were often down to 1 nurse for the 6 critical patients. Still no construction for oxygen on both sides of the room or wall mounted monitors, or suction machines. They would sometimes assign an aide in the room to help me move the beds from one side to another for oxygen purposes but often it was just me trying to navigate the room by pushing one bed over, then the other slightly turned, and back and forth I went until I switched the beds over. That of course took up so much time that I didn’t get to give out all the medications and treatments. I never complained. Just thought I was doing the best I could. I had been there about 9 months working as the only nurse with 6 critical patients. When one shift I was told not only did I have to care for the 6 patients on A7, but since there was no nurse assigned to B7, I had that room as well. That was 12 patients on 2 different floors. So, there I was running through 2 sets of double doors from 1 unit to another to make a feeble attempt at caring for these very sick patients. Every time I was on A7, someone would call me from B7 and visa versa. This was an impossible task and when I spoke to the supervisor, I was told there was just no one to help me. The final straw came when I returned from B7 only to find one of my female patients on A7 dead. I called a code we tried to resuscitate her but to no avail. It turned out her potassium level was so high that she had a cardiac arrest. There had never been enough time for me to check labs so I never knew, but was counseled on not checking the labs of 12 critical patients. That was all the reality check I needed. I resigned. I was hired at Roosevelt Hospital into the ICU and began there in April 1979.

 I was 22 years old at the time, still new to nursing and certainly new to a real ICU. When I was interviewed at Roosevelt hospital I had no intention of going into the ICU, however the recruiter said to me:” you have ICU experience under your belt, there is no other place for you to work” I said OK, thinking I had no choice. I liked the ICU at Roosevelt Hospital. I was making just over $10.00/hour. After 13 months on the job I was promoted to assistant head nurse of the ICU. There were 4 distinct units. ICU (or special care), as it was called, CCU, (coronary care unit) SICU, (surgical ICU) and RICU (respiratory ICU). We had the usual cases of trauma, shock, overdose, MI, big surgical cases, usual for an ICU. It was there that I met Valery Hughes, soon to become my best friend, colleague and co- author. At first, I feared Valery. She was so self- assured, confident, popular. She didn’t take well to new people. But I persisted, I wanted to be her. She always got the complicated critical cases, all the doctors liked her, many wanted to date her, but all respected her. She was called RUDY by her friends. As the years went by we became friends, went back to school together so we worked the same schedule and on some of the same patients. We were always conferring about cases, so it was no surprise when we started to see this new mysterious illness, that we would develop the same curiosity, interest, and eventually passion.

 THE EPIDEMIC BEGINS DR.T. (Ellen)

 The first patient I remember that had what we later knew as AIDS was a physician. We called him Dr. T. he was in his 60’s. He came in with pneumonia, worsening breathing, and was soon on a ventilator. He kept requiring more and more ventilator support (higher concentrations of oxygen and something called PEEP (positive end expiratory pressure) which means he was given oxygen under pressure delivered to him at the end of expiration as well as inspiration. Despite all attempts at treatment, including antibiotics, medicines to hold up his blood pressure, he continued to decline. This was horrific for nurses to watch; we did not sedate patients on ventilators properly in those days, patients lay awake and squirming in the bed while we kept them restrained, listened to lungs, poked, prodded, drew blood, stuck tubes down their windpipe, watched their fingers and toes get black from drugs used to treat severely low blood pressure, saw their skin slough off from pressure from laying on a stretcher. Interns and residents examined them frequently, as if another round of lung auscultation would yield something interesting. They stuck him repeatedly for arterial blood gasses in case a change in the ventilator setting was warranted. The focus for the interns and residents was to learn so they all liked to “TREND” things, labs x-rays, lung sounds, etc., although there was little to no change in the patient’s status. They often required assistance in turning the patient, so they could get another listen to the lungs, so they could report back to the attending physician. Back in those days there were no hospital beds in the ICU like today with special surfaces for pressure relief. There were only stretchers like you see today in the Emergency Room, meant to be temporary until a bed was secured in an ICU, but this was the ICU and we had little comfort measures for patients. Dr. T. was diagnosed with ARDS (adult respiratory distress syndrome) in which the lungs are filled with fluid and the alveoli (tiny units of respiration in the lung) become leaky not allowing for exchange of oxygen and carbon dioxide. A bronchoscopy was performed, and it was discovered that he had an atypical type of pneumonia called PCP (pneumocystis carinii pneumonia), most nurses didn’t know what it was, and I surely didn’t. There was no google or computer access, so we had to do old fashioned reading. This pneumonia was usually found in cancer patients who had undergone chemotherapy or had other types of immune disorders, never found in otherwise healthy people. Dr. T stayed on a ventilator until he developed bilateral pneumothoraxes (lung collapse) and soon after he died. The nurses of the unit held a grand rounds presentation on PCP for the hospital. It was for educational academic purposes. No one thought we would see this again. A popular belief circulating around was that PCP had obtained a new virulence; one that could strike an otherwise healthy population. Later we would find out that was incorrect.

CHERYL: NONE OF THIS MAKE ANY SENSE (Ellen)

 Several months later a young woman, Cheryl, came into the ICU with some type of shock syndrome.  Cheryl developed the same symptoms as Dr. T but again, no one thought anything of it. Again, a ventilator was used to help her breathe, medications called vasopressors used to keep her blood pressure up, we again saw black fingers and toes, and (This is because these medications squeeze the heart taking blood away from the extremities, so some digits can fall off. (This is called necrosis; when there is no blood supply to the extremity resulting in dead muscle tissue; extremely painful too.) It was at that time that toxic shock syndrome was being tossed around, and I remember Valery and myself checking her to see if she had a tampon still inside her.  There wasn’t. Cheryl ended up having a similar course of hospitalization to Dr. T. and ultimately died horribly. ICU nurses saw this kind of thing in other circumstances, treating massive infections, surgical wounds, trauma, etc. We did find out during her hospital stay from her sister that she had been homeless and a prostitute, but no bells went off at that time.

ROBERT: YOUNG PEOPLE ARE DYING WHY??? (Ellen)

Robert was a 25-year-old white man. He came in short of breath, and had been to a local doctor complaining of symptoms of a bad cold, congestion, cough, fever. He had been put on the usual antibiotics, told to take cough syrup, Tylenol for the fever and rest. He continued to be short of breath but stayed home until it got so severe that he came into the emergency room and was immediately intubated when he got to the ICU and placed on a ventilator. I remember him gasping for air as he tried to answer questions about his medical history. Because he was so young and healthy prior to this (we interviewed his family extensively asked about travel to other countries, his place of employment) nothing jumped out. We put him in one of our back rooms down the hall to isolate him since we had no idea of his diagnosis. I remember we started to use gowns, masks and gloves to go in the room. Staff were scared that he had something contagious. I remember him being awake for most of the time and frightened, again, no use of sedation like today. So, you can imagine what it might be like to have a tube the size of a hose down your throat and your arms restrained. I remember holding his hand a lot, I remember being curious about what could have happened to him to make him so ill so fast. No one made the connection between him, Dr. T and Cheryl. Robert was dead within days of coming into the hospital. At that time, the ICU had hired a new director, Dr. Findlay who had also taken an interest in the case of Robert. I remember he took me down to the autopsy room for Roberts post mortem. That was my second autopsy and only my first since the one I watched in nursing school. The pathologist and pathology attendant were in gowns, goggles, hats, double gloved. Dr. Findlay and I were told to wear protective gear. I will never forget when they opened his chest there were craters (called blebs) in his lungs that were so filled with fluid that the pathology assistant had to use an actual soup ladle to scoop out the fluid for pathology. I remember feeling nauseous and amazingly curious. I remember thinking no wonder he couldn’t breathe! The interest of physicians, especially the infectious disease specialists, was piqued. We started to talk amongst ourselves. Robert’s pathology came back that he had PCP (pneumocystis carinii pneumonia).  I am guessing other hospitals in the city had started to see young male patients presenting with what started off as flu like symptoms, treated conservatively for mild bacterial infections with antibiotics, Tylenol, fluids and rest. But they entered hospitals short of breath, immediately went into ARDS got placed on a ventilator and died within a few days.  It left families in shock, no time to prepare, say last words or even goodbye, if they even made it to the hospital on time. That was the beginning as I recall it. Many young men started pouring into the city hospitals all with the same symptoms and died sometimes within days. There was clearly something going on but none of it was news worthy at the time. However, it was the subject of the unit day after day.  I don’t recall at what point we knew or even asked if these men were homosexual, but we ultimately did find out and when any young man came in with these symptoms the term GRIDS was coined. (Gay related immune deficiency syndrome).   I remember hearing some of the attending doctors talk about their theories of this illness. “(rectal mucosa was fragile and could easily spread disease} repeated sexual encounters with multiple partners could cause the spread of something. People were talking about toilet seats, eating utensils, public areas being some source of contamination. Everyone was scared that it was contagious and heavy precautions were taken. We wore gowns, gloves, masks, goggles; even Operating Room booties over our shoes.

Interns and residents came and went as Roosevelt was a teaching hospital. They examined, prodded, listened to lungs ordered more lab tests, x-rays, arterial blood gasses; everyone had some opinion about this new pneumonia we were seeing, but no one knew what we were about to deal with. “The tip of the iceberg” the term that became associated with this epidemic was true.

The first report of AIDS didn’t come out until June 1981 where 5 cases of pneumocystis carinii pneumonia among previously healthy men in Los Angeles^[1]. All were homosexual 2 had died when this was published. By the end of 1981 there were 270 reported cases of severe immune deficiency syndrome in gay men 121 had died. Dr. Findlay died of AIDS sometime in the 1980s.