We are studying lymphatics and immunity in my anatomy and physiology 2. For extra credit, we watched a movie called "And the Band Played On". It was about the AIDS epidemic and the doctors from the CDC as well as the French scientists and doctors trying to figure out what was killing gay men, hemophiliacs, and others.
I learned about things like bath houses, the retrovirus topic, patient zero. Forgive me for sounding a bit "sheltered". I just never knew about the bath house topic but then again, I was born in 1988. :)
My mom was a restaurant manager at the time and even lost some of her employees/dear friends to AIDS. It truly was saddening to read about how these people lost their lives and how initially no one knew why. Anyhow, I'm sure many of you were nurses in the 80's when AIDS was such a mysterious crisis. If you were a nurse in the 80's, please chime in. Being in the medical field, what was it like? Were you afraid of getting this mystery disease? I read that there were some healthcare workers who refused to care for anyone with "gay cancer". Watching this movie got me thinking. It was fascinating to research AIDS from a cultural and scientific perspective. Things definitely have shifted in a different direction.
I was only born in the 80s, so I basically have no personal knowledge of the AIDS epidemic. However, sadly, there are still nurses out there who don't understand universal precautions, and I'm talking nurses who went to school after they were created. A nurse who used to work with me was assigned to a surgery; the patient happened to be HIV+. So how does she get ready to go out and interview him? She puts on a space suit that we use for total joint surgeries (and this was most definitely not a total joint-they are done elsewhere), knee high waterproof shoe/leg covers, and several layers of gloves. I cannot even imagine how that patient felt when she arrived in his room. What's even sadder is that she was never called on it by management- no write up, no further education.
What??!!!!? I cared for many Patients with HIV as a student and that just reeks to me. I grew up in the 80s: Ryan White was a household name and only a few years older than I am. There has definitely been a change in healthcare as far as the stigma of HIV goes (from my limited experience, mind you) but I'm absolutely appalled at the lack of knowledge in the public in general. A friend has two children that were HIV+ at adoption and some of the things said/done to her and her babies appalls me.
Specializes in Critical Care, ED, Cath lab, CTPAC,Trauma.
It is hard to explain what a scary time it was. People were dying of this wasting disease and no one knew why. It appeared to be contagious...but no one knew how. We didn't wear gloves...ever really. You would have a trauma come in covered in blood and you would start working. Cutting off clothes.... starting lines...it's just what you did. I remember sticking IV angiocath needles in the ED mattress to keep tract of them. Scrubbing blood off our hands later with hibiclesne and a surgical scrub brush getting it out from under our nails. It was crazy.
How many patients did I care for that I had no idea what was wrong with them. "Failure to thrive" was an adult diagnosis. They had "idopathic neutropenia"
We had the office manager of one of our favoutite MD's come in sicker than sick...attempted suicide from having an affair...but she had bizzare labs. After line and codes we found out on the autopsy she had Hep C and HIV. WHAT???? A middle class house wife? He boyfriend had HIV and told the story in custody for he shot (not fatally) her husband. The patient didn't make it. I know that one nurse contracted Hep C from her. We were all tested for MONTHS. Given experimental meds and gamma globulin. I sometimes wonder if it affected my immune system somewhere along the line.
Then everything changed. It was identified. We did at first...much to my dismay....garb from head to toe. The special respirators were introduced....now know as the N-95. We had these space suits. We saw TB come back with a vengeance. We started wearing gloves. I still don't like them to start lines.
There were nurses who refuse to care for these patients. They were afraid. It was sad and frightening. These patients felt like piranhas of society...no body wanted them.
The hardest part was the AIDs dementia, when they were delirious and unable to control their diarrhea; we would be cleaning up and cleaning up, while the poor fellows were trying to climb out of bed and having to be restrained. Always seemed to happen at night, when their night fevers and sweats were the worst.
I told the morning housekeeper to clean his mop bucket as he would for an isolation case, because I had to mop the floor with it (pt had gotten out and left a trail down the hall). He absolutely panicked, because "I touched that bucket!!". The fear on his ashen face was horrible. Goes back to the whole, now we glove for everything.
I had gowned and masked to go into another room, when my AIDs pt's tray came up; so I grabbed it to give it to him before it got cold because I didn't know how long I'd be in the other room. I was so embarrassed when he, his doc and his family all looked at me in shock, as though I didn't want to get near him! I pulled down the mask and explained, but still...... don't know if they believed me.
I over heard some of our older aides saying some of the most ignorant stuff, such as "if you buy a house from them, you'd better change all the toilets out!" "If so and so brings food to the pot luck, I just throw it out".
Specializes in Emergency Department; Neonatal ICU.
GrnTea, I have read that story on another thread and it still breaks my heart. As a matter of fact, I was thinking about it before I reached your post while I was reading this thread. I grew up in the 80s and went to college starting in early 90's. Safe sex was a huge topic and if you were tested for HIV, the test took at least a week to come back.
And the Band Played On is a wonderful book. I recommend it.
Specializes in Case mgmt., rehab, (CRRN), LTC & psych.
I was born in '81, so I was too young to be a nurse during the 1980s. However, my aunt succumbed to AIDS circa 1986. She contracted the disease about three years prior when she had been attacked, raped and stabbed on a muddy hillside one rainy night.
I was in kindergarten when she died and I recall the family members acting very hushed about the situation. She was cremated and no one knows where her ashes are to this very day.
I just wanted to thank the OP for starting this thread. Many of the posts have included details that are incredibly sad, but every one of them also give me hope about our society and make me look forward to the future of nursing. What a great topic, and thank you to everyone that has responded! To every poster--you have all touched my heart!
I posted some of this on another thread last year.
I'm old enough that I worked ICU when the AIDS epidemic was just beginning, and I was in the San Francisco-Seattle axis where we had a lot of gay patients anyway. Remember, too, that the gay community was fabulously supportive of community in general, always turned out in large numbers for blood drives. A few years later I thought back to all the blood I had slopped around in from the Irwin Memorial Blood Bank in SF when I worked ICU-- think open heart surgery, GI bleeds, multitrauma...
We had a unit clerk who was a photographer and came home from a trip to NYC not feeling well, He never really got better, said his docs thought he had some sort of leukemia but they had no idea what it was. He died. I had many gay friends, and it seemed like every other one of them was sickening and dying and nobody knew why. Until we did.
Universal precautions came out. We knew how the disease was transmitted and how to avoid exposure. That was the easy part for me, but I couldn't understand why it was so hard to understand for so many others.
I must say that it was a time when I was not proud of a lot of my colleagues. I would take my patient assignment of some poor man with what was then a fatal pneumocystis pneumonia (thank god we have better treatment now) and soon a fearful face would peek around the door with the unspoken question: Would this nurse let me in to see my lover who is dying? So many wouldn't, would shoo them away saying, "Family only!" as if the patient would have any family members who would even acknowledge his existence; I never met one who did. It absolutely broke my heart. "Please come in," I would say. "I'm sure he'd be so happy to have you here. Would you like to help me bathe him?" "Can I?" "Of course you can, I'm sure he'd prefer you to me at this point!" The tenderness between these guys was indescribable. And we would all cry.
I had one experience, among so many, that was particularly heartbreaking. I was floated to a general surgery floor for a coupla summer days and for some reason we had a man with pulmonary failure on the "hot" side of the house, where the sun just baked the rooms all afternoon and no amount of air-conditioning would keep up with it. He wasn't my patient but I covered him when his nurse went to lunch, and his light went on. "Hey, Jen's at lunch. I'm GrnTea, what can I do for you?" He was lying in bed with the oxygen on, sweating and breathing with difficulty, and he said, "I'm just so hot. Can you help me?" So I got a basin of ice chips and alcohol (remember that? We did that before we had cooling blankets) and some washcloths and started to swab him down. And he started to cry. I stopped, startled, said, "What? What? Am I hurting you?" and he wept and wept and said (and this is where I start to cry now and every time I think of this story, thirty years later), "Nobody has touched me for three weeks." That poor man, in the hospital sick as a dog and knowing he was probably going to die very soon, and not one nurse had helped him bathe or eat or turn as he got weaker and weaker. It broke my heart.
The next day I went in and asked to care for him again. He had been found dead on the floor of his room, having taken off his oxygen to go to the bathroom, probably because he thought nobody would answer his light, and probably desaturated enough to pass out. And they didn't find him until change of shift because nobody looked in on him all night.
And this was at the hospital where universal precautions, now called standard precautions, began. Not everybody seemed to believe in them, though. I was engaged and learned not to tell my beloved about my day at work because he was so afraid I would be exposed and he would lose me. Later I was able to explain blood and body fluid precautions to him in a way he understood, but it was a tough sell.
I haven't seen the movie but I have the book by Randy Shilts, and was living in the Bay Area when he wrote it. He died. If you write a book about nursing in the AIDS epidemic years, I would like to read it.
Grn Tea - I remember your posting in the other thread then - it moved me almost to tears then, and it does now too. Thank u for doing what u did. I just can't imagine the heartache, the just total helplessness of being treated like that - just breaks my heart.
It is hard to explain what a scary time it was. People were dying of this wasting disease and no one knew why. .......They were afraid. It was sad and frightening. These patients felt like piranhas of society...no body wanted them.
Thank goodness we do better when we know better.
I totally agree, and many of you who are younger cannot image the fear caused by the NOT KNOWING!! Here was a 100% fatal disease of unknown etiology, without any idea about routes of transmission, that came out of "no where".
Imagine,if you can,something like Ebola.....deadly, painful, and highly contagious, but with a slower death. How many people do you suppose want to run in and get a fatal disease, or worse, bring it home to your KIDS?? No one KNEW that it was not transmitted by casual contact, nor did anyone want to test the theory.
Princess Diana was among the first to publicly hug an AIDS patient, and it was a huge step in bringing the fear level down, at least among rational folks.
This is a very interesting thread. Thank you to everyone for sharing your stories. I've been a nurse for 8 years so I have no nursing stories to add to this thread. I graduated high school in 1990, so I remember the AIDS epidemic from a teenager's view. It's fascinating (and heartbreaking at times) to hear about it from a nursing perspective.
Yes exactly. It's easy to judge the shameful behavior of professionals in hindsight. However it must have been unbelievably frightening to have a 100% fatal disease, that you know nothing about, loose in the community. I can easy see how panic would set in. My generation views HIV as a manageable illness, not a sure death that it was in the 80s.
I just wanted to thank the OP for starting this thread. Many of the posts have included details that are incredibly sad, but every one of them also give me hope about our society and make me look forward to the future of nursing. What a great topic, and thank you to everyone that has responded! To every poster--you have all touched my heart!
(((Hugs)))
I think it is an important part of history culturally and medically speaking which is why I brought it up. You really should watch the movie "And The Band Played On". If you enjoyed this discussion, you'll enjoy the movie.
I totally agree, and many of you who are younger cannot image the fear caused by the NOT KNOWING!! Here was a 100% fatal disease of unknown etiology, without any idea about routes of transmission, that came out of "no where".
Imagine,if you can,something like Ebola.....deadly, painful, and highly contagious, but with a slower death. How many people do you suppose want to run in and get a fatal disease, or worse, bring it home to your KIDS?? No one KNEW that it was not transmitted by casual contact, nor did anyone want to test the theory.
Princess Diana was among the first to publicly hug an AIDS patient, and it was a huge step in bringing the fear level down, at least among rational folks.
You're right. Even though I was born in 1988, I can totally get the not knowing part. We know a lot more about AIDS than what was known then so it can be easy to forget. But some of these posters are telling stories of what happened to their families that go a little bit beyond the "not knowing" and more into the realm of hate (at least in my opinion). It had to have been a scary time for all medical personnel... Even the most compassionate ones.
AmyRN303, BSN, RN
732 Posts
What??!!!!? I cared for many Patients with HIV as a student and that just reeks to me. I grew up in the 80s: Ryan White was a household name and only a few years older than I am. There has definitely been a change in healthcare as far as the stigma of HIV goes (from my limited experience, mind you) but I'm absolutely appalled at the lack of knowledge in the public in general. A friend has two children that were HIV+ at adoption and some of the things said/done to her and her babies appalls me.