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Author Topic: Rounds Revisited  (Read 2540 times)

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Offline Joe K

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Rounds Revisited
« on: October 27, 2013, 04:48:13 PM »
Dear Forum Members,

I just read the sticky note in Research and Ann made a number of comments about how we must remember the history of the HIV community.  Toward that goal, I am reprising my “Rounds” post with a little updating.  It is just a glimpse into my journey with HIV, which has been repeated by hundreds of our members.

I share this, because if we do not learn from our history, we are doomed to repeat it.  However, the real reason I share this, is to remember those who have gone before us and the legacy they have left us.


The year is 1985, the city is Detroit and I am about to start my “rounds”.  I enter the hospital and proceed to the floor, called “the morgue”.  The walls are a putrid green with orange doors as the structure is decades old and it reminds you more of a prison than a hospital ward.  There is little joy here, few people smile and you hear no laughter.  You expect to see Nurse Ratchet round the corner at any moment.

A smell permeates the floor, very complex in composition, however essentially unidentifiable, as individual smells.  There is one smell though, that is undeniable and it is the first smell that hits you every time you enter this floor.  The smell is of death because this is the AIDS floor, where most of the patients have come to find some comfort, as they proceed to their demise.  For too many people they have nowhere else to go except here.

This is where HIV positive people, now ravaged by AIDS, come to die.

As I walk the floor. the signs of disease and death are virtually everywhere.  Because of over-crowding, most rooms have two patients, or more and it is rare to see visitors.  Every door contains warning signs that range from fluid precautions to food restrictions, to medicine interactions, or oxygen in use.  Perhaps the coldest sign is the one requiring that anyone wishing to enter must wear a gown, shoe covers, cap, mask and gloves.

As if these poor souls did not have enough to deal with, they had to endure treatment as if they were lepers.  It is almost impossible to console someone when you are unable to touch him or her physically.  Fear permeates the floor and one cannot help to notice the dearth of nurses or hospital workers, nor the silence that attends so much hurt and misery.

The fear is evident by the food trays and linens stacked and sometimes even a cup or two of medications, in front of the door.  These are the early days of AIDS and we did not understand the illness that was dropping our friends in droves.  For some of our friends, when they became too ill, they often came here to die.  That death was often inevitable and many died in such agony that I no longer could bear to remember.

Death surrounds you and even among the great suffering, you can understand the fears of the attending staff.  It is very normal to fear what we do not understand; especially when it is an actual illness, which at the time would certainly kill you.  You can sympathize with self-preservation on their part, because in the end it came down to their risking their life for that of a total stranger.

That fear is what drove many of us, to attend to our fallen comrades.  For most of them their family and friends had long deserted them and so many of us from that time, felt a moral duty to let no one die alone.  It was the time of AIDS buddies and AIDS candlelight Vigils.  A time when food boxes, clothes closets, meals on wheels and group dinners, were all that kept us alive.  When support groups began and just about anything else that we could conceive to support each other and to ease the doomed ones with their passing.  It was a time when possibly the most depraved humor reigned, epitomized in T-Cell Naming Parties.

Faithfully I would pause in front of each door and don the required garb.  How sad to enter a room and see the patients in their horrific state and in need of simple compassion.  Upon seeing some of them, you could understand why the food remained outside.  Many had such severe OIs, that swallowing was all but impossible.  Some had raging fevers and others were drowning in fluid that had built up in their lungs due to PCP.  Almost all of them had some type of IV, shunt, pick-line, ventilator; catheter or whatever else that may ease their suffering, as prolonging such a life was never really an option.

I would move from room to room and do whatever the patient may want, which often involved just touching them (no gloves) and listening.  They were the forgotten souls, cast aside by society and sent here to die.  Surely, they deserved better than this, but this was often all that we could provide.  These were the days before AIDS Service Organizations existed, when society turned its back on the HIV community.  Churches would forbid our having memorial services while funeral homes refused to either embalm positive people or even allow for closed casket memorials.

It was a time that birthed the AIDS Vigil as a way for us to honor the multiple deaths when we found a church that would permit our services.  We held these services, wherever we could find a space, because all that really mattered was that we honored our dead and just maybe, it could provide an opportunity for us to find some type of closure.  Believe me when I tell you how hard it is to find closure for hundreds of your friends’ deaths.

For those living with HIV, the prospects were rather dim as the only support systems that existed were essentially volunteer groups with limited resources.  There were no medications to treat HIV disease.  There was little government money for HIV services and what little existed, was quickly consumed by the core services that most poz people needed at that time.

The churches that refused to accept dead positive people were certainly not going to help living ones.  Therefore, for us, our resources were our members and for those of us who were surviving, we accepted the horrible truth that if we did not watch over each other, there would be no one else to do it for us.

So I would move from room to room, feed some patients, assist with personal hygiene, maybe help them take a walk, fluff a pillow or whatever, just to stay busy.  Too many times, I remember entering a room and upon seeing the patient, especially when they were sleeping, I would sit and silently cry.  Not only did I cry for what I was witnessing, I cried as I faced a reality that could very well become mine someday.  I cried because I felt helpless in the onslaught.

I would cry for those who could not or because of a hardened heart, would not.  I cried knowing that my actions were no more than the proverbial finger in the dike, as all I could do was try to ease the suffering and watch them fade away, one at a time.  It was a time that we must always remember with honor and respect, for those who have gone before us, as they instilled a sense of real honor and support into legions of positive people.

It was a very difficult time to be alive and on some days even harder because I was not dying, at least not literally.  I was perplexed on how I survived yet somehow I found the strength to persevere and in doing so I have thousands of wonderful memories of friends who showed real valor up to the end.  So many of them had nurtured and supported the early AIDS movement and we all did what we had to do.  At that time, it would be unthinkable to do any less that you could, so we volunteered for everything from AIDS Buddies and rounds to clinical trials.

To some of you this may all seem to be surreal, nevertheless these were some of the early days of HIV.  It was a time when we each found our calling and if your health allowed it, you just had to give back to your friends and community.  It was a time of immeasurable horror, punctuated by remarkable hope.

A time that removed almost an entire generation of gay men, who would have served as true role models for both the Gay and HIV communities as friends, family and lovers.  Thousands upon thousands of souls taken from us, leaving immense voids and we had no idea of what we had done to invite such a plague.  I do not imagine we will ever understand. 

A time that challenged so many of us, a time when rounds were really just a part of a day in the life of far too many people who sought to do anything rather than dwell on the death and dying that surrounded us.  A time that remains forever seared into the conscience of anyone who lived through it.  A time that I still hold dear, because even through the pain, it involved the people that I loved the most and these memories are all that I have left.  Sometimes, painful memories are all that remain.

I share this so that readers can begin to understand why some of us seniors insist on sharing this history, because we have witnessed where many of you may be going.  Over the last few decades, we have continued to bury people who were compliant with EVERY FACET of their HIV management, except they died anyway.  We have seen people who stop all treatment and somehow dodge the Grim Reaper for years.  We have watched as people who seemed perfectly healthy, would experience rapidly declining health and die unexpectedly.  We have supported friends, who have decided to stop all medications to attain a reasonable quality of life, even when they knew that such a decision would result in their death.

We have allowed, supported and celebrated the passing of scores to HIV.  It never becomes any easier as the hundredth death hurts just as badly as the first one.  It is impossible to have witnessed so much of the horrors of HIV, in the early days and not to have been inspired, to do all that is within your power to help those who came after you.

Therefore, when I share something or give some advice, my only goal is to offer support and maybe ease the suffering of others.  I got my positive results, from a nurse with the Red Cross.  She then handed me, a card for the Henry Ford Hospital infectious disease clinic and showed me the door.  That is what constituted HIV test counseling at the time.  Advances in HIV treatment and the Internet have changed all of this, mostly for the good, except there remains a true lack of historical perspective concerning HIV and our present reality.

Without history as a guide, people think that the current public HIV programs will always be there.  I would not count on it.  We fought long and hard for everything that we have concerning HIV services however, it can all disappear by a simple vote of Congress.  When I complain about administrative and political situations, it is because I know what our government and many of our citizens are capable of allowing, as I have witnessed it.  It took Ronald Reagan almost eight years into his presidency before he even uttered the word “AIDS” and his lack of concern has been devastating to the HIV community ever since.  Try to imagine where we might be today, if we had the seven years of true research that was lost by an uncaring president and disinterested public.

It is shortsighted to assume anything and like it or not, we pozzies are a different breed and 30 plus-years has confirmed that if we do not take care of our own, few others will care.  Too many of our ASOs have been compromised, through corruption, or are being forced to chase federal dollars, which often skew services to what Washington expects you to provide, rather than the real need of your particular area.  It is like whoring yourself just to remain open and in Fort Lauderdale, there was a local ASO that simply closed the doors, dumping 3,000 pozzies onto the streets to fend for them selves.

I could go on, but you surely get my drift.  Even though I have moved to Canada, I remain involved with the HIV community because I still believe in how important it is, for the newly infected, to meet seniors like me.  How different might many of our lives have been, if we had some seniors of our own back in the 80s?  If we had someone who could have warned so many of us about the dangerous drugs or whatever, however those people do exist today.

I share my history because it does repeat concerning HIV; we still have the same arguments even though our understanding and treatment options have exploded.  Sadly, some things never change and there are times when I will react as my history indicates I should; and I may even appear extreme in some of my views, yet none of it comes with any malice.  I choose to share my life and views, because even in this age of HIV treatment, issues remain that can often be helped by a historical perspective.  My main goal is to provide “food for thought”, to get you to think and if I can share something that helps another, that to me is reward in itself, even if you do not like the way I say it.

I truly believe in all of us sharing what we remember, because we do not want the pozzies of today to ignore the lessons from our history.  You are not the first, nor the last, to become HIV positive, try a new drug, have no side effects, or have your medications fail, as it has been happening for decades.  History is important because knowledge is power and advocating for oneself is the pinnacle of the HIV community. 

As to rounds, I would do them again in a heartbeat.


Offline hcj90

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Re: Rounds Revisited
« Reply #1 on: October 27, 2013, 07:27:22 PM »
This is a powerful post.  Quite a vivid picture into what it was like in the early days.  I can't imagine being shunned by family and friends, and how horrible that would be.  Thank you for what you did, and are doing.  Last year, my first experience with this was hearing the doctor tell me I had Aids.  Since then, it has made me be more compassionate to other people, and learn not to judge.  I am thankful for my family and friends who have been totally supportive.  I have been realizing this past year, what is really important to me.  I am so glad that I have the chance to really do the things, and spend time with the people that mean so much.  Thank you again for this thought provoking post.

Offline Cojo

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Re: Rounds Revisited
« Reply #2 on: October 28, 2013, 12:23:14 PM »
It is with deep and immeasurable honor and gratitude to the heroes and champions before me that I sit and read this post with tears streaming down my cheeks. This is a history of the deepest depths of compassion ever imaginable. We cannot lose this history lest we lose the story of the human capacity for goodness in the face of holocaust. Joe, please never stop; I remain in communion.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD
Feb 2015 CD4 420 30% UD
Jul 2015 CD4 480 32% VL51 !!
Sep 2015 UD
Feb 2016 CD4 460 35% UD
Aug 2016 CD4 378 33% UD

Offline britchick

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Re: Rounds Revisited
« Reply #3 on: October 28, 2013, 02:49:23 PM »

Thanks for your incredible post.I  feel really weepy and very humble after reading it.Thanks for everything that you have done and continue to do for our community.

I wish your  story could be used in schools or colleges .I cant even begin to imagine how difficult and painful those years were.

Im so greatful for all the medical advances since the 80's and truly hope the next generation will try to learn from the past.


Offline Joe K

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Re: Rounds Revisited
« Reply #4 on: October 28, 2013, 04:18:12 PM »
Thanks for the warm wishes, but I need to make one thing very clear.  The experience I recount happens to be mine, but that is because I put my experience into words.  My story is the same as hundreds of the members here and the thousands and millions of positive folks throughout the world.

My goal here is to merely share some history of the HIV community and any accolades you may give, are humbly accepted in the name of those who have gone before us.


Offline Theyer

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Re: Rounds Revisited
« Reply #5 on: October 28, 2013, 06:27:57 PM »
Although Joe writes off Detroit it describes London and I imagine all Major cities . A time off such extremes A Joe ? Some times a memory hits me and I can,t breath for a while. I gained comfort from reading about WW1.
Good one Joe
love Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mitch777

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Re: Rounds Revisited
« Reply #6 on: October 28, 2013, 09:01:25 PM »
While my experience of the dark days was vastly different than Joe's I remember hearing of such horror as a 23 year old pozzie in 1982. It truly seemed to be a death sentence hanging over my head for well over a decade. I was lucky to have support from my family to some extent but it was limited due to my parents divorce announced months before I became ill and everyone scattered across the country at the time. A dark time not to be forgotten.
Thanks Joe.
« Last Edit: October 28, 2013, 09:08:27 PM by mitch777 »
33 years hiv+ with a curtsy.

Offline wolfter

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Re: Rounds Revisited
« Reply #7 on: October 30, 2013, 11:47:14 AM »
I've not been able to not think about this post for a couple of days now....thanks Joe ;) 

Thanks for expressing what I would never have the eloquence to share.  I'm often surprised that I survived the physical illness, but am astonished that survived the emotional toll. 

I guess one major regret is that I left nursing as the toll was too horrendous.  Every single day was a reminder of my own future.  As if taking care of strangers wasn't tough enough, to suddenly start caring for those I knew just about killed me. 

25 years later, I'm still not sure how I dealt with it all.  I had one previous idiot doctor who indicated in a report that I was in denial about my diagnosis.  Well, perhaps.  What was the alternative since no treatment was available?  I guess I chose to live in the day instead of focusing on my demise.  I witnessed many whom started dying immediately after diagnosis.

Thanks for sharing our story.

Being honest is not wronging others, continuing the dishonesty is.

Offline Mrmojorisin

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Re: Rounds Revisited
« Reply #8 on: October 30, 2013, 01:08:01 PM »
I have read the first two paragraphs..I don't have time to read it all now as I am at work, but I did print it out.
 Having been a lifelong history buff, I am very intrigued by the history of HIV, and everything that goes with it..Thank you for sharing your story...
Started Meds On 5/1/2012 Norvair, Truvada, Prezista, and Bactrim

4/17/2012--CD4 83/ VL 353,000  7.0%
5/15/2012--CD4 218/ VL 4,970    14.1%
6/27/2012--CD4 146/ VL 420      6.1%
10/11/2012-CD4-223/ VL-62       9.5%
2/14/2013--CD4-215/ VL-119      13.6%
7/3/2013---CD4-256/ VL-UD       18.0%
10/18/2013 CD4-223/ VL-UD       22.2%
01/23/2014-CD4-381/VL-UD       25.3%--Dropped the Bactrim
05/01/2014 CD4-370/VL-UD       23.5%
01/08/2015 CD4-455/VL-UD       28.7%
06/18/2015 CD4-422/VL-UD       31.9%
01/07/2016 CD4-275/VL-UD       31.3%
02/10/2016 Switch meds to Tivicay and Truvada
04/25/2016 CD4-426/VL-UD        34.1%
07/14/2016 CD4-414/VL-UD        38.0%

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