January 14, 2007, 11:57 am

He Never Even Knew He Was Sick

bedpans

Inventory time!

JCAHO must be coming!

Let’s see what we have…

Two different sizes of washbasins…

Check!

Two different sizes of emesis basins…

Check!

A bundt cake pan…

A cheese grater…

A salad bowl…

Six cups of varying sizes that you can’t use when you are NPO.

Two urinals, one of which is guaranteed to make any man feel inadequate,

And a nice ice cold metal bedpan with a “pucker” factor so high you couldn’t produce a BM if your life depended on it.

Even our industrious nurse appears to doubt its efficiency!

******************************

Paul was stunningly handsome.

About 30 years old, give-or-take.

He didn’t know he was sick.

*****

His initial destination that summer day had been a concert. Three of his friends waited in the car while he ran back into the house for a couple of Tylenol. “Woke up with a bit of a headache,” he had said.

He ended up in ICU.

Per his friends, he came back out of the house, turned, locked the door…

…and had a grand mal seizure.

*****

911 was activated and Paul was taken to the nearest emergency department.

Unlike a regular seizure, he did not regain consciousness. He was placed on a ventilator and in full isolation in the Intensive Care Unit.

CT scans were relatively primitive in the mid 80s, maybe it showed up on a regular x-ray.

It’s hard to remember after twenty some-odd years.

He had a brain infection.

Multiple cysts noted.

It was a rare opportunistic infection.

The sign of a depressed immune system.

Paul had AIDS.

*****

Just the fact that Paul was in full-blown isolation tells you something of the mindset of health care providers in the early days of the AIDS epidemic.

It wasn’t because he was immunosuppressed, it was because the staff was afraid.

It’s hard to recollect just how much was known about AIDS at the time.

It was known that it was spread by sexual contact, was found in body fluids and was 100% fatal. It had/was decimating the gay community.

Some people in health care were panic-stricken.

One nurse I knew left ICU and went to ER so he wouldn’t have to take care of AIDS patients.

Anyone want to find the logic in that?

The private room. The door shut, always. Nurses, doctors and respiratory therapists donning full isolation garb, including masks and foot covers just to enter the room. Even hair covers!

Hair covers!

Good lord, how many diseases transmitted in hair can you name?

*****

Paul’s family and friends never gowned up.

The kept a 24 hour vigil, every day, two at a time the entire time he was in the ICU.

Talking to him. Holding his hand. Filling him in on what was happening outside the hospital.

His family had the hardest time dealing not only with Paul’s condition but the diagnosis and the fact that Paul was gay.

They did not know until Paul’s friends felt they had to know. They didn’t believe it. They couldn’t believe it. They wouldn’t believe it.

All they knew was that their son was dying. Of AIDS.

A family desperately clinging to denial is a painful thing to witness.

*****

For two weeks, Paul never responded. Not to voice. Not to touch. Not to pain.

One day, his friend Alice was at the bedside, holding his hand and talking.

“Are you doing okay?” she asked.

Paul nodded.

His nurse nearly fainted against the wall.

*****

Evidently the treatment regimen for the infection had worked.

Paul became alert and eventually extubated.

He did have some residual neurological problems and lived out the rest of his days in a county AIDS unit.

I heard that his family never did accept either the diagnosis or Paul’s sexual orientation.

******************************

If you have never read “And the Band Played On – Politics, People and the AIDS Epidemic” by Randy Shilts, I suggest you buy it and read it. Published in 1987, it is a powerful history of the first five years of the AIDS epidemic.

Get ready. You’ll be shocked. Dismayed. Frustrated. Angry.

You won’t be able to put it down.

You’ll realize how far we’ve come since those early days.

And you’ll realize just how much more we need to do.

16 Comments

  • Dr. Nic
    Dr. Nic

    January 14, 2007 at 12:21 pm

    I’ve been recommending that book for years. I remember the first time I read it (probably in the early 1990s) after the HBO movie based on it came out. There were so many failures at so many steps in the early days (and so much blame to go around). If you really want to get frustrated check out this compiling the work of a doctor who does not think HIV causes AIDS.


  • Chris
    Chris

    January 14, 2007 at 12:40 pm

    It is so sad to me that my kids have never known a time when there was no such thing as AIDS. When I was in highschool (as they are now) pregnancy was the biggest worry (with some treatable STD’s) from unprotected sex. Now it is life and death. Soooo sad.


  • Dawn
    Dawn

    January 14, 2007 at 3:02 pm

    How well I remember my first patient with GRID (as it was know in the early days). The patient was in full isolation but I used to go in and take off my mask and hat while I talked to him (door closed, of course). It was known that the contact was body fluids, even then. I just had no fear. I wasn’t touching him, I was just sitting and talking to him. This was back in the early 1980’s, in Detroit (unfortunately, my bravado caught up with me when he was also diagnosed with TB and I had to have repeated TB tests until they were certain I didn’t get TB…Oh, well…) He was a very nice man and died too young.


  • Dana
    Dana

    January 14, 2007 at 5:57 pm

    I do HIV research and am intending to go to med school and be an ID doc, so in my “free” time, I shadow an ID doc. One of my patients has end-stage AIDS – this story reminds me of him. I don’t know about his family, the person that comes with him is his partner. But it’s horrible, watching this extremely sweet man dying such a miserable death. It strengthens my resolve, though, to go back into HIV research once I’m out of med school and residency.

    And you’re right about And the Band Played On. That book is INTENSE.

    Thanks for the post – I appreciate it.


  • Melissa
    Melissa

    January 14, 2007 at 7:26 pm

    Sometimes my coworkers will ask if we should put HIV patients in rooms by themselves, like what we do with MRSA patients. The ignorance of nurses, even today, is shocking.


  • Craig
    Craig

    January 15, 2007 at 7:53 am

    I’m not in the medical profession, so I apologize in advance for any inappropriate comments. I do appreciate the hard work that you put in. My brother was initially diagnosed with the same kind of AIDS related brain infection. We visited him every day after he was hospitalized. It turns out he’s not even HIV positive – he has a glioblastoma multiforme. Anyway, it seems to me that the ignorance is just ignorance and can work both ways. What I mean is that Dawn chose to expose herself to an unknown risk, which I understand may be required to give care, but I’m assuming she was treating other patients and she exposed those patients to the same risk without their knowing?


  • Jeff
    Jeff

    January 15, 2007 at 8:43 am

    Our lecturer at monash uni showed us selected clips of “And the band played on” and i could tell that it was indeed a very intense and strong message.

    We did it as part of our sociology module in Theme II – “Health, Knowledge and Society”. We even had AIDS patients come down to tutorials to speak to us of the kinds of stigma they experience first hand and it was indeed insightful!

    i think the medical professionals like you, especially those in the ID wards, deserve a salute. their courage goes beyond normal limits and the patients’ welfare is always at heart, hence the necessary strict universal precautions.

    the most recent epidemic that displayed that i guess would be the SARS outbreak in China, Taiwan, Singapore.


  • apgaRN
    apgaRN

    January 15, 2007 at 1:08 pm

    Very thought-provoking, Kim. I linked to this post in my latest, as it provoked some thoughts for me. 🙂


  • Dawn
    Dawn

    January 15, 2007 at 1:09 pm

    Craig…yes, I was caring for other patients, and no, they were not at risk from my behavior. I was not having any contact with the patient’s body fluids, so couldn’t pass the HIV virus, and TB is an air-borne pathogen. You have to breathe it in from an infectious person’s cough…it’s actually quite hard to catch. Remember, in previous centuries people lived with TB members of the family. Not everyone in the family caught it. You can’t get it off someone’s clothing (remember, I had a full gown on in the room). If I had developed TB from the patient, then it is possible that I could have been infectious to others then, not just from exposure to him.


  • Type-B Premed
    Type-B Premed

    January 15, 2007 at 3:15 pm

    I’ve been enjoying your blog. I added a link to it from my blog.
    I was in the sixth grade when Magic Johnson went public about his HIV. It seemed that instantly public schools began warning us about AIDS, using it to scare students out of unprotected sex.
    I might have to take a gander at the recommended book. I’d like to revisit the past with semi-mature adult eyes and perhaps compare how things have changed.


  • A Bohemian Road Nurse...
    A Bohemian Road Nurse...

    January 15, 2007 at 5:49 pm

    Years ago, I read “And the Band Played On”. It was…powerful. I highly recommend it to anybody in the health profession.


  • A Bohemian Road Nurse...
    A Bohemian Road Nurse...

    January 15, 2007 at 5:50 pm

    Oh yes, and I’m still giggling about your term “pucker factor”, hee hee!


  • Annemiek
    Annemiek

    January 16, 2007 at 5:19 am

    I could tell almost similar stories from working in an ICU in the late 80’s. I saw the movie, didn’t know it was made after a book.
    Just recently when I thought I had not seen fulblown AIDS for years, I got a patient that had refused all medication. A terrible disease.


  • beajerry
    beajerry

    January 16, 2007 at 8:26 am

    I’m trying to figure out what the bundt cake pan-looking thing is for.


  • oncRN
    oncRN

    January 16, 2007 at 8:35 am

    kim – ‘And the Band Played On’ is the reason i am a nurse. Thanks for reminding me.


  • N=1
    N=1

    January 16, 2007 at 5:36 pm

    I took care of atients in a NYC ICU before AIDS had a diagnosis. You’re right about the full isolation garb. But what I remember is how healthy most of the men looked as their pneumocystis made their lungs stiff, and how their rapid demise was so shocking. The unknown was what was so frightening initially.

    And then the demonization of the disease – and those who suffered from it. It was a bad time for a long time.


About Me

My name is Kim, and I'm a nurse in the San Francisco Bay area. I've been a nurse for 33 years; I graduated in 1978 with my ADN. My experience is predominately Emergency and Critical Care, and I have also worked in Psychiatry and Pediatrics. I made the decision to be a nurse back in 1966 at the age of nine...

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