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Author Topic: Shades of the past haunting the present  (Read 3946 times)

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Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Shades of the past haunting the present
« on: December 30, 2009, 10:25:08 PM »
I'm going to have a bit of a rant, so bear with me.

I am posting this in the LTS forum because I believe those who post here may understand my rant a bit better than those less familiar with some of the nasty stuff that happens with HIV.

Also, I just don't have the strength or the temperament tonight to fend off those who only see a rose colored world.

Here, where I live, I woke to cloudy, gray skies and snow on the ground. The snow continued all day, melting off the streets most of the time, until the temperature dropped around 4 p.m.  Somehow, the gloom of the day was appropriate for the tenor of the events taking place within it.

It was at 4 p.m. when the doctor sat down with me in his office to let me know this person I know was declared brain dead and the docs at the hospital would be taking him off life support. So, just as the snow began to stick to the car and the streets began to glaze over under a sheet of ice, this person was most likely taking his last breaths.

I know - everyone dies. But the thing is, this person needn't have died this way. He died from advanced PML, which advanced much as it used to a decade ago, before the cocktails were passed out to those of us invited to the HIV party.

It needn't have happened like this, but like so many others, this person didn't take his meds. He had them. He had no trouble getting refills, no trouble accessing medical care.

He didn't take his meds until it was too late, when he was diagnosed with PML symptoms. The doctors, nurses and others tried valiantly to do whatever they could to stay the course and arrest the progression of this progressive disease in his brain.

But, in the end, it was just too late. There was nothing anyone could do.

Another man I knew died about a year ago from a combination of things, but also was the first person I had seen in many years to have KS lesions not only covering the outside of his body, but most of his internal organs as well.
 
He was the first man I had ever seen who had such horrible KS lesions they had actually disfigured his face. It is an image I would like to forget, but cannot.

The doctors tried everything they could, but nothing helped. In the end, there was nothing that could be done because the guy, for whatever reason, eschewed medical care when it might have done him some good.

Do you want to know what the really sad part is?

They aren't alone.

I know a dozen people just off the top of my head who have either refused meds or jacked around with them so much that it is likely they will also suffer the indignities inflicted on people who find themselves with late-stage HIV disease, often referred to as AIDS.

When I hear people complain about the thought of taking meds for the rest of their lives, or I hear people who refuse meds because they fear side effects or body shape changes, I want to send them the images in my mind  - images of  people who had the same complaints, and, in some cases, did just as they are doing.

I know we each must make our own decisions. But I often wonder if these people would make the same choices had they seen the things I and many of us LTS folk have seen.

OK, that's my rant.

HUGS,

Mark
« Last Edit: December 30, 2009, 10:29:14 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline joejoe1972

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Re: Shades of the past haunting the present
« Reply #1 on: December 31, 2009, 01:55:49 AM »
No Mark I think if they had seen the things we have and gone threw the things we have they would be taking those meds like their life depended on it. Face it, we are only here because of the meds, no matter how we may bitch about them they are saving our lives. Without them, a lot and I do mean a lot of us would no longer be here. These unnecessary deaths that are continuing to happen even tho, us guinea pigs have paved the way for better understanding on not only how the meds affect us but how this disease itself does. They should heed our cries and hear our words, for in the end that one decision is life or death. My deepest sympathy's and rant all you want brother we hear you and understand.

Best Wishes,
JoeJoe
Hiv+ since 1991, AIDS since 2001

Offline jm1953

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Re: Shades of the past haunting the present
« Reply #2 on: December 31, 2009, 05:05:10 AM »
Amen.  Many of us long termers have been through and seen it all.  Not a day goes by when I don't think of so many friends who have passed.  Mark, your post brings me to remember two of my best friends who died within months of each other in 1987.  They were in their late 20's early 30's I think.  I'll never forget the agony they both went through.  It was so amazingly sad and painful to watch.  Then I was diagnosed a few months after their passing.  I experience a lot of survivor remorse thinking, why was it them or so many others I loved that passed and not me.  Of course the answer is being lucky enough to live long enough to take the new classes of drugs as they came down the pike.

Folks need to realize how lucky they are having the vast majority of choices of meds they have now instead of just massive doses of AZT which they were giving my two friends in 87.   

So rant and rave as much as you like Mark.  I totally get it.!

Your pal,

Jeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline BT65

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Re: Shades of the past haunting the present
« Reply #3 on: December 31, 2009, 05:54:39 AM »
Mark, please accept my condolences on the passing of your friend, or acquaintance. 

The first person I knew personally to die of complications due to Aids had KS terribly, as you described.  He had a couple other things as well (lymphoma, lung cancer), but died galliantly.  He was the nicest, most generous person I knew.  He had cashed in his life insurance policy, and was buying all his friends these expensive presents.  And, he left me his Honda Goldwing.  Wow, talk about a walk down memory lane.

Yeah, whenever I see a post about being afraid to start meds, or complaining about having to take meds the rest of one's life, I think about how lucky people diagnosed now are, and those of us who are having luck with the new meds.  We've been through horrors a lot of newly diagnosed people will never know, but if they did, I'm sure they would stop their bitching, and take the meds without gripe.  So rant away, sweetheart, I hear ya.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

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Re: Shades of the past haunting the present
« Reply #4 on: December 31, 2009, 11:45:22 AM »
Mark
Condolences on the passing of your friend.

Joel
Poz Bear Type in Philadelphia

Offline allanq

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Re: Shades of the past haunting the present
« Reply #5 on: December 31, 2009, 11:55:06 AM »
Mark, that was a very powerful message. Whenever I see someone post that they are afraid of starting meds, all I can think of is how grateful I am that there are now effective meds and how fortunate I am to have access to them. And I say that despite the problems I've had with lipodystrophy and a slew of other side effects. Without the meds I would have been dead a long time ago. I have no doubt about that.

I do think that you're preaching to the choir when you post this in the LTS forum. Those in the Living With forum need to hear this.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline AlanBama

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Re: Shades of the past haunting the present
« Reply #6 on: December 31, 2009, 11:58:11 AM »
I hear you load and clear honey; I get exactly where you're coming from.

Yesterday at my clinic, I overheard the pharmacist discussing treatment with a relatively newly diagnosed guy.   The guy was claiming he couldn't be compliant in taking his Sustiva, because it "paralyzed him".  He claimed when he awoke in the mornings, he "couldn't move" for about 2-3 hours.

The pharmacist explained that you need to keep the drug at constant levels, the peaks and valleys probably were contributing to his problems, etc.    I had to wonder, could he really "not move" or he just didn't FEEL like moving?  Hell, I don't feel like getting out of bed ANY day, but I know I have to.

We discussed it on the way home, and decided that a lot of these younger people haven't ever seen anyone with advanced AIDS.   They have no idea; many weren't born until the 80's, when we were diagnosed....they probably are diagnosed in the 2000's, and really have never known anyone who was dying from AIDS.   Their mindset and ours are totally different, and I have no idea how we could make them understand.   It's frustrating, but I have resigned myself to just taking care of ME, and not trying to worry about everyone.   Some people only learn by experiencing things, they won't listen to what anyone tells them.  It hurts me that they may have to "experience" advanced AIDS to learn about it, but I can't change their perceptions with my own tales of woe (truthful though they may be).

So, it is what it is.   It's frustrating to us, and difficult to watch.   But I really don't have a solution....

HUGS,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline leatherman

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Re: Shades of the past haunting the present
« Reply #7 on: December 31, 2009, 03:30:57 PM »
Firstly and most importantly, my condolences Mark. It's always sad to lose a person you know no matter the relationship with that person. Much less to lose them so needlessly. :'(

As I come around to nearly the 2nd anniversary of when it all began to fall apart, I give myself a mental beating everyday when I take the meds that keep me alive. Because while I'm still beathing, it was I (along with Jim and the doctor) who allowed Jim to go without testing, without knowing, and without treatment for so long until there was nothing that could be done. Just like your friend, I knew better, and so did Jim, and so did the doctor. Jim paid the ultimate price for our laziness, stupidity, and procrastination, and I pay the lingering cost of the aftermath of our foolishness.

whenever I see a post about being afraid to start meds, or complaining about having to take meds the rest of one's life, I think about how lucky people diagnosed now are, and those of us who are having luck with the new meds.  We've been through horrors a lot of newly diagnosed people will never know, but if they did, I'm sure they would stop their bitching, and take the meds without gripe. 
what kills me is that they even get to have the discussion about taking meds cause their numbers are getting into the range. Occasionally I'll post a reply and politely tell the whiners that they should realize many people don't even find out that they poz until they're in a hospital on the verge of death with no tcells and a skyhigh VL. Then there isn't a choice, isn't a discussion, and isn't anytime to complain about the meds because then it's already AIDS (notice, Ann, I didn't say "full blown AIDS" LOL though that's what I was thinking.  :D)

Damn! I remember being so sick with AIDS the docs told to take the meds or die! Actually they said you're so sick, take the meds and you still might die! and that was just to take AZT  ::)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Online Miss Philicia

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Re: Shades of the past haunting the present
« Reply #8 on: December 31, 2009, 05:58:55 PM »
Condolences, Mark. 

Yeah, I often have the same thoughts.  I know of a few personally in the local area that have stopped meds and either keeled over or are in the process of doing so.  One was even a mental health professional working with other HIV+ patients.  I think in most cases it's a mental health issue these days -- but I don't know the details with each person so it's just idle speculation on my part. 

Some people just grow very tired of dealing with it all.
"Iíve slept with enough men to know that Iím not gay"

Offline OneTampa

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Re: Shades of the past haunting the present
« Reply #9 on: December 31, 2009, 09:48:22 PM »
Condolences Mark,

I join others in phrasing complete understanding of your post.

I too have lost several very close family members, many friends and a long term partner. At times it appears overwhelming. As someone approaching the 25th year HIV+, I remain amazed that I am still here and able to type this post.  I am sure strict adherence and support has a lot to do with it. Although I am happy to be alive, I often feel sad that those I have lost are not here with me in life. I miss them terribly.  It will take another lifetime to unearth and enjoy those human treasures again.

Regarding those who do not take their meds or go off tick, the recent rise in drug resistant HIV is sparking concern in the medical community that can potentially impact us all--not just the specific individuals in question.  Lack of adherence (reasons ranging from cavalier attitudes, outright refusal, fear, etc) appears to be a major cause/concern. So, this disease has created a world community for better or worse.
« Last Edit: December 31, 2009, 09:54:00 PM by OneTampa »
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline Theyer

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Re: Shades of the past haunting the present
« Reply #10 on: January 01, 2010, 04:53:26 AM »
I am sorry Mark,the limitations on what we can do for others is very painful,Theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline pozniceguy

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Re: Shades of the past haunting the present
« Reply #11 on: January 01, 2010, 01:38:32 PM »
Mark, I totally agree.  have met a few "youngsters" at the Drs office ..dreading the meds.  how will they look if......, how will they feel.....  etc.    I am usually too blunt and say something to the effect of  you will be alive....for a long time if you take them....   dead if you dont....... trying to soft peddle the message is not a good strategy.....   
i am so sorry that you and others have had to see such needless and unhappy results caused by issues that can be easily addressed....with a little rational thinking......   I know not everyone is bound by rational thinking.....  (  end of my rant)


Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline AndyArrow

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Re: Shades of the past haunting the present
« Reply #12 on: January 02, 2010, 12:43:26 AM »
Mark,

I'm so sorry to hear about your friends passing.

It's so frustrating when there are those of us fighting to get and keep getting our meds and other just throw it all away.  How very sad.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline poet

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Re: Shades of the past haunting the present
« Reply #13 on: February 03, 2010, 01:30:16 PM »
In Off Topic, the posts have been about the music of the 1980's, with posters remembering song after song.  With the music playing, perhaps we over here in this section need to bring in the voices: the voice of the Marty to whom I was assigned, generous with the little he had, facing eviction from a building slated for renovation in Manhattan, often without food and a pile of meds which were doing nothing; the voice of Rob who did everything his doctor told him to do even when it made no sense to some others (as in you must take AZT); the voice of an ex, Scott. who sought out an underground study since nothing above ground was working, had an allergic reaction and died shortly thereafter; interweaving scenes from Long Time Companion, Parting Glances, etc. reminding everyone- alive now- that loud as the music might play, it could never drown out the reality of hiv/aids = death for so many and maybe, one or two might grasp how simple compliance is and how blessed it is to live at a time when compliance = life. 
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Jeffreyj

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Re: Shades of the past haunting the present
« Reply #14 on: February 03, 2010, 08:39:44 PM »
Mark,
As usual, you hit the nail on the head. It would be great if all newbies had to read this before starting their meds. I really think it would make a huge impact.
I'm so sorry for your loss. I don't know how you find the strength to do what you do. You are one strong son-of-a-gun.
Jeff
Positive since 1985

Offline denb45

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Re: Shades of the past haunting the present
« Reply #15 on: February 04, 2010, 09:52:05 AM »
Mark, sorry to hear about the loss of a good friend..........My last Partner DIED of PML, it was awful to just watch him DIED that way (He died back in 1995) it was too late for him too, even tho he took he Meds, he still DIED, I watched him take his last breath when he DIED at 11:59 PM AUG 8th, 1995, I took him to the hospital on a Tuesday afternoon, and by Thursday at midnight he was gone  ??? know one even knew he was so sick, know one even knew he had PML, he found out he had AIDS back in JAN of the same yr. and was put on MEDS, but, by AUG of that yr. he was DEAD, it was too late for him  :'(

For those of you who don't know what PLM is here a real good explanation:

Progressive multifocal leukoencephalopathy (PML), also known as progressive multifocal leukoencephalitis, is a rare and usually fatal viral disease that is characterized by progressive damage (-pathy) or inflammation  of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal). It occurs almost exclusively in people with severe immune deficiency, e.g. transplant patients on immunosuppressive medications, patients receiving certain kinds of chemotherapy, patients receiving Natalizumab (Tysabri)[1]  for multiple sclerosis, psoriasis patients on long-term Efalizumab  (Raptiva)[2]  or AIDS patients.     There is no known cure for this, and The median survival of patients with PML as a complication of AIDS is 6 months  ???
« Last Edit: February 04, 2010, 10:24:23 AM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Shades of the past haunting the present
« Reply #16 on: February 04, 2010, 10:21:43 AM »
Hey Dennis,

I am sorry about your late partner. I remember those days all too well. There were some meds, but none seemed to work all that well.

It wasn't until the PIs came out and they combined them that we had success. Unfortunately, that was too late for your partner - and many people I knew as well.

But at least your partner tried to fight.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline leatherman

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Re: Shades of the past haunting the present
« Reply #17 on: February 04, 2010, 11:14:15 AM »
he found out he had AIDS back in JAN of the same Dr. and was put on MEDS, but, by AUG of that Dr. he was DEAD, it was too late for him  :'(
so many people die so quickly from the time they find out. It's amazing how "well" one can feel while this disease is ravaging them from the inside. They used to predict death (life expectancy) within 18 months of getting the AIDS diagnosis back in the late 80's; but from then to now, so many people have died so much quicker. While my Randy was gone in exactly 18 months, my Jim was gone in about 60 days from his diagnosis.

Those idiots that hold off on taking meds because they "feel healthy", or procrastinate due to fear, just don't understand the dangerous chance they are taking at perhaps, even if they do get medical care, of never recovering. How anyone can hear our stories of how deadly this virus is and how necessary the meds are and still not take them is just beyond my comprehension.

It's also incredibly sad. Each one of these deaths, like that of Mark's friend or my second partner, not only brings the saddness of a death but an extra dose of grief because of the stupidity and ignorance of the situation surrounding their demise. It's one thing to fight for many years and finally succumb to the disease. Afterwards, although there's the grief, there can also be a sense of accomplishment of years gained and a battle hard fought. However, the deaths because they didn't know their diagnosis or weren't on medications, are fraught with dissatisfaction and saddness from such an unneccesary death.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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