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Author Topic: Who Qualifies As a Longterm Survivor?  (Read 49033 times)

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Offline Andy Velez

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Who Qualifies As a Longterm Survivor?
« on: April 26, 2008, 11:14:04 PM »
From time to time, as has happened again just recently, the question comes up as to who and what is a longterm survivor. Those who've been around here for a while know the conversation can become a contentious about this subject. People have wondered (and worried) if they qualify. Do you have to be HIV+ for at least 5 years to qualify?Some have resented those who are relative newcomers by the standard solely of length of time they've known themselves to be infected.

Some have learned very soon after becoming infected about their status. For others it has been a longer time and even years during which they either didn't know or sometimes suspected but didn't get tested for various reasons until circumstances such as becoming very ill made their positive status official. 

As you know from reading in the I JUST TESTED POZ, lots of people come here when it's all brand new. Someone just wrote in here to this site the other days only hours after being told. To him someone who's been living with HIV for even a year or two might be considered a longterm survivor.

What I suggest is that more important than the length of time one has been positive is how one feels about it and themself  as a veteran of living with the virus. Further, that's it's more important to continue to share experiences, information and points of view here than it is create any kind of a clique or hierarchy about this. For sure those who have lived through the earlier years of the epidemic  sometimes have memories and insights that are valuable. Some have offered an amazing perspective and knowledge about everything from meds to politics to very personal experiences. And others whose experience has been shorter have been through a lot too as you know if you're a regular reader here.

Overall I would just like to have this forum always be welcoming. Anyone who wants to be here is in as far as I am concerned. And I hope the spirit of inclusion will dominate over anything else.     

 

Andy Velez

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #1 on: April 27, 2008, 06:51:01 AM »
Who Qualifies as a long term survivor

The following article was written in 1992. The author of the article Michael Callen, was born 4/11/1955 and died 12/27/93 of complications due to aids. A lot has changed, since this article was written, the statistics mentioned are obsolete now, but there is still a lot of it , that remains true. How many other Long term survivors, can relate :

http://en.wikipedia.org/wiki/Michael_Callen

 LONG-TERM SURVIVAL
By Michael Callen

Talk Symposium Amsterdam 1992



I want to make one thing clear about what I'm going to say about long-term survivors: I'm not a scientist, I do not represent these to be scientific. You might think as the Monet of AIDS: I will give you impressions. I think they are worth something, but for those you blue-suited people who want to see the data, all I have to offer is what I learned to actual long-term survivors, and I basicly asked them in their own words why they thought they had survived and I covered a broad range of possible reasons and some patterns emerged.

Long term survival: first thing to say is that we exist. You might not know it if you relied for your information on mainstream media. According to the US government statistics - which you can believe or not, they are not very well kept, but they are all we have - at least in the US 9% of people with full blown AIDS live 3 years or more, and 5% live 5 years or more. Unfortunately, there have not been significent improvements in median survival since I was diagnosed in 1982. The life expectancy of a person with AIDS has only been extended by 6 months. I personally believe that that 6 months is attributable to our ability to prevent pneumocystis pneumonia, the number one killer of people with AIDS.

The first thing I want to say about long-term survivors is that there definitely is a survivor personality. But for every pattern I found, I found exceptions. And that actually made me very happy, because it says to me that there is no single way, there is no recipe, no magic way to become a long-term survivor. I personally believe that each person's AIDS is unique, is different. They probably arrived in it in a slightly different way. We are each bio-chemicaly, biologically, gentically unique. And so I never expected that any one approach would work for everybody with AIDS. But I do found the patterns that I found fascinating and I will provide them to you.

If I had to summarize in one word the common characteristic among survivors, it would be 'grit': people are incredibly feisty, incredibly knowledgable, not at all passive, very aggressively involved in the struggle to survive.

They spoke very passionately of what they referred to as 'healing partnerships with their health-care providers', by which they meant that they respected the opinions and expertise of the various health-care providors that they sought out, but they did not do something simply because they were told to do something. In every instance, they wanted to know what their options were, they wanted to know what the possible side-effects were, and they had worked out relationships with their health-care providors that permitted a dialogue to go back and forth. And in fact, one's relationship with one's doctor is probably the most important relationship that you have, with the possible exception of your lover, when you have AIDS. And it is a lot like having a lover: it involves fighting, and being honest about your emotions, and talking. And the long-term survivors that I interviewed were very eloquent about how they had worked over years to achieve a really open wonderful relationship with their health-care providers.

Every long-term survivor mentioned the phrase 'major life-style changes'. That meant the obvious: it meant that they immediately started practicing safe-sex, to avoid exposure to other possible co-infectious factors. Most of them gave up drugs and alcohol, although some of them not entirely.

Also, among lifestyle changes: a lot of people had dabbled with diet changes, but in almost no instance had anyone been able to persist in a radical diet change.

Everybody talked about, among lifestyle changes, what they called 'emotional house cleaning', usually after they had survived their first major opportunistic infection. It represented a crisis to them, and they did some soul searching. They went through their relationships and they either repaired them or they ended them. They spoke generally about needing to get rid of people in their lives who refused to support them in their belief that they could survive well beyond statistical projections.

I don't know whether it's true here, but in America Elizabeth Kubler-Ross is very popular and everybody is an instant expert on dying. And there are five stages, and people will constantly treat you as if you are in one of the stages, usually denial. If you talk about maybe sticking around longer than the 18 months allotted to you. People will look at you and say 'yeah, sure !' But long-term survivors were militant about it; they simply wouldn't put up with it. They spoke very movingly about needing to surround themselves with people who would support them in their hope.

Interestingly, another thing that everyone mentioned was that knowledge of another long-term survivor was crucial to maintaining their own belief in long-term survival. And that's really not so mysterious, when you stop to think about it. If you set out to do something that no human has ever done, it's a different experience than if you set out to do something that few humans have done. You know that it can be done.

The most surprising finding among my sample of long-term survivors was a clear rebirth of spirituallity. With two exceptions - me and one other guy - all the long-term survivors talked about taking great comfort from their spiritual beliefs. It split almost in half: half had actually returned to the religions of their childhood, although none in a fundamentalist, judgemental way, and the other half spoke more generally of the sense that there was a meaning to suffering, a life after death. And there was no question that they took great comfort from those beliefs.

The long-term survivors were all passionately committed to life. That may sound pretty obvious, but for those of you who may have been around people with AIDS, this is going to sound simplistic, but I can't think of any other way to put it. When a catastrophic illness lands in your lap, you really have two choices: it's either a challenge to live, or challenge to begin dying, and I have seen people make both choices. I have seen people give up, die on cue, and I have seen people fight.

I want to be really clear here: there is, among people with AIDS, this short-hand notion, that if you want to be in the long-term survivor sweepstakes, you have to have the right attitude. But nobody ever really defines what that means. What is the right attitude? What I concluded from interviewing four dozen long-term survivors, as friends, is that you have to have the right attitude, by which I mean you have to believe in the possibility of survival, and you have to be hopeful and surround yourself with people who love and will support you. That will not, however, guarantee that you are a long-term survivor. The inverse seems to be true, however: I have not yet met a single person, who became a long-term survivor, who did not believe that it was possible.

It is interesting that, at least it was interesting to me, that the profile of extraordinary survivors with AIDS was pretty identical to the profile of extraordinary survivors of other so-called terminal diseases.

Interestingly enough, about half of the long-term survivors were in long-term loving relationships, and those who were spoke about how they could not envision going through AIDS alone. And taking tremendous comfort and support from their loved-ones, and in some cases it was practical support.

All of the long-term survivors had dabbled with non-allopathic medicine. What I would say about the long-term survivors is that most intergrated allopathic and non-allopathic medicine. Out of the 48 people I interviewed intensively, only one survivor had completely turned his back on Western medicine, and refused to take any pharmaceutical. And I have to say that he is still alive and glows with health. He is probably the healthiest among us. He is macrobiotic.

Certainly, no single alternative approach to healing predominated, I mean, there were people who were into Reiki, or massage, or meditation, or diet, or vitamins. And frankly, most people did not stick with anyone approach. There was a lot of walking around.

Virtually every long-term survivor was involved in the political struggle to end AIDS, which is very interesting to me. My theory of why that might be so is that AIDS can very easily consume you - your AIDS. You can close the world around you. When you have AIDS, to know that you are having some effect on other people, some beneficial effect on other people, to get outside your own tragedy and connect with other people, seem to be very important, seem to be healing.

I have been pretty prominent in my opposition to the use of AZT. And I didn't expect to find similar opposition among the long-term survivors, but I did. It was pleasantly surprising. Of the four dozen, only four had ever used it at all, and three are dead and one is dying of AZT-induced lymphoma. The overwhelming majority of long-term survivors had somehow managed to resist the enormous pressure to take AZT. This was very much a distinguishing characteristic of long-term survivors, by which I mean a scepticism about experimental medications. Long-term survivors, for what it's worth, take a very sceptical wait-and-see approach.

Nine out of 10 drugs that ever enter any phase of human testing fail, as either too toxic or non-effective. Well, that to me is quite startling if true: if the odds are stacked against you 9 to 1, then I do not understand the current drugs-into-body frenzy. My AIDS activist friends who are in the forefront of this drugs into-body frenzy, I feel are very misleading to people with AIDS who are frightened and desperate. They only seem to talk about two possible outcomes to taking experimental drugs: one is that it works and one that it doesn't. There is a third, apparently much more common possibility, which is that you will be worse off than if you did nothing at all. And nobody likes to talk about that because it's so unpleasant, but from my reading of the literature, sometimes doing nothing is much better than doing the wrong thing. And it would seem, on the record of government sponsored clinical trials, that most people are actually worse off taking these toxic drugs that if they hadn't started at all.

The above was abstracted from a transcript of a talk Michael Callen gave in May 1992 in Amsterdam at the international symposium 'AIDS; A Different View'.

Michael Callen is the author of 'Surviving AIDS' published by Harper Collins Publishers, New York 1990, (ISBN 0-06-016148-5)



Ray
« Last Edit: April 27, 2008, 10:10:09 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
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http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Ann

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Re: Who Qualifies As a Longterm Survivor?
« Reply #2 on: April 27, 2008, 07:46:55 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.

However, I don't really see the wisdom of making this forum exclusive to LTS using some cut off date. Someone who is more recently diagnosed, but diagnosed with advanced aids, could easily qualify to post here. As could someone who is diagnosed later in life.

What I would like to see is people who are more recently diagnosed have a bit more respect when posting here. I don't like to see our veterans being given a hard time. Nobody's virus is better or worse than anyone else's, however the experiences of the virus can be very different indeed. Most of us will never quite know what some of our veterans went through - and we should count our blessings, not give them a hard time when they want to vent about those experiences.

More newly diagnosed people can vent about their own experiences too, and we have not one, but two forums dedicated to this purpose - "Living With" and "I Just Tested Poz".

Having a forum dedicated to LTS makes it easier for them to find each other and therefore relate to each other in their own threads, without having to search through "Living "With". I think they deserve to have this convenience. They've earned it. 

Ann
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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Online Dachshund

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Re: Who Qualifies As a Longterm Survivor?
« Reply #3 on: April 27, 2008, 08:28:24 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.

That's the definition I go by, but I understand the shades of grey ;) associated with HIV and aging. Unfortunately for us LTS we have to deal with both so maybe we do get a bit cranky at times. Though I've never really witnessed a "hey you kids, get off of my lawn" attitude in the LTS forum.

What I do know is that people that have been infected as long as I have share a sorta post traumatic aids/stress syndrome. Along the lines of what soldiers must feel with their brothers and sisters they shared a foxhole with during a time of death and turmoil. Before anyone jumps on me, I'm not equating our struggle to fighting in war, but the LTS know what I mean.  We deal, we manage, but we know that there's only a handful of us left with that shared experience and it gives us comfort. Well it gives me comfort.

So what's the definition of a LTS? Can't really tell you, but I sure as hell know one when I see one.

May I suggest to all the LTS that if you think someone is posting inappropriately in the LTS forum, just hit the mod button. Nine times out of ten the mods will move their thread to the appropriate forum, so we don't have to run them out of the yard with a water hose. ;D
 
Now back to the topic at hand, Dunlap's Disease (my belly done lapped over my pants).
 

Online Miss Philicia

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Re: Who Qualifies As a Longterm Survivor?
« Reply #4 on: April 27, 2008, 08:38:04 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.


I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.  Seriously though, I've noticed in my "meat life" long term survivor monthly support group here in Philly that the primary raison d'Ítre seems to be a shared sense of side effects from being on pre-HAART regimens. 

Yes, there are shared accrued mental issues for those of us suffering in excess of a decade of infection (or so...) but what I just described above seems to actually be the primary cause of seeking refuge among like-minded (or rather experienced) sufferers.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #5 on: April 27, 2008, 08:46:37 AM »
I don't agree that "anyone who wants to be here is in," or why have a LTS forum?  I used to think 10+ years, but then, how would some people relate to, as Philly mentioned, being on those god-awful large doses of AZT some of us had to endure? 

People who are recently diagnosed, and who get an AIDS diagnosis may well have some valuable input, but then again, cannot relate to the years of unique struggles a lot of us had to deal with, pre-all the new medications and treatments that are available now.  There are certain things only those of us who have been living with this since the late 80's, very early 90's, can relate to.

I think Dach's suggestion, of hitting the mod button if we (I) do feel offended is probably the best solution at this point.  Otherwise, I can see myself probably catching hell from a mod at some point. 

I'm thankful for a LTS forum, as there's no local support group where I'm at, and would just hate to see it become open to everyone who feels the need to post here about something they really have no idea about.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Dachshund

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Re: Who Qualifies As a Longterm Survivor?
« Reply #6 on: April 27, 2008, 08:49:11 AM »
I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.

I agree with that, most of the LTS around here were on on some type of meds pre-PI's. We all share the common fond memory of AZT.

Online Miss Philicia

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Re: Who Qualifies As a Longterm Survivor?
« Reply #7 on: April 27, 2008, 08:55:52 AM »
Furthermore, the point of this forum is NOT to create some sort of social clique based on a fabricated desired VIP status.  There are real reasons behind it, and it's actually quite insulting that others may view that any of us want to be in this god forsaken category.  Seriously.

Any non-LTS'er who wants to trade my situation for theirs I'd gladly trade shoes with you.  Any day, any time.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #8 on: April 27, 2008, 09:09:30 AM »
Any non-LTS'er who wants to trade my situation for theirs I'd gladly trade shoes with you.  Any day, any time.

I second that.  Seriously.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline hartiepie

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Re: Who Qualifies As a Longterm Survivor?
« Reply #9 on: April 27, 2008, 09:19:06 AM »
To my mind, a LTS is someone who was diagnosed before or during the first year of so of the advent of the PIs.   Ann


This has been my yardstick though I can't say where I got it. Don't ever remember seeing anything official about it.


Furthermore, the point of this forum is NOT to create some sort of social clique based on a fabricated desired VIP status.  There are real reasons behind it, and it's actually quite insulting that others may view that any of us want to be in this god forsaken category.  Seriously.
Any non-LTS'er who wants to trade my situation for theirs I'd gladly trade shoes with you.  Any day, any time.

My Mom has cancer and will sometimes bring up the 'it's a gift' routine and I know she is trying to cope with her illness. I sometimes will hear that around HIV/AIDS, but I wanna scream "Show me the Return Counter now!"

Also, once I found out about the IGNORE option on these boards, it's much easier for me to read them because certain posters have a way of getting to me (and undoubtedly, I do for them).

Offline Andy Velez

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Re: Who Qualifies As a Longterm Survivor?
« Reply #10 on: April 27, 2008, 09:41:31 AM »
Ann's comment about wanting those who've been living much longer with the virus to be treated with respect here is something I strongly concur with. They've lived through a lot. They have experience and knowledge worth passing on -- and have earned a special respect for having lived through some tough times that others may hardly be able to imagine today.

Andy Velez

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #11 on: April 27, 2008, 12:06:30 PM »
"I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.  Seriously though, I've noticed in my "meat life" long term survivor monthly support group here in Philly that the primary raison d'Ítre seems to be a shared sense of side effects from being on pre-HAART regimens. 

Yes, there are shared accrued mental issues for those of us suffering in excess of a decade of infection (or so...) but what I just described above seems to actually be the primary cause of seeking refuge among like-minded (or rather experienced) sufferers." quote Philly
..........................................
Well, this brings up, in my mind anyway, (or whats left of it), the question about LTNPs who, like myself, were diagnosed before PI's but have never been on any meds.  Do we have to go to our own forum to post about depression from dealing with HIV for so long?
Poz Bear Type in Philadelphia

Offline ademas

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Re: Who Qualifies As a Longterm Survivor?
« Reply #12 on: April 27, 2008, 01:24:45 PM »
There's also those of us who were infected early on (the winter of '82 here), and didn't test because we just didn't care to know, or because our heads were partially buried in the sand, or because there was nothing we could do.

I remember my sero-conversion well, and I feared it at the time, and I remembered it all those years.  I watched men I had been intimate with get sick and die.   Others took the high doses of AZT and became dreadfully ill, and most of them died.  No...actually...all of them died.  I was there with them, and the writing was on the wall, but I still didn't test.  I didn't see a good reason to do so at the time, and I was terrified.

When I finally did test it was early '94.  CD4's 79 and a 4% ratio.  Weird, because in the end, it was my decision not to test that spared me from monotherapy, and that qualified me for the Crixivan/AZT clinical trial (you had to be treatment naive).  Sometimes I wonder if that decision not to test--based mostly on fear--is what saved my life.  That might sound overly dramatic...but I had several good friends who were not AZT naive (and did not qualify for the early clinical trials) pass away before the trials were complete.

Anywho...I guess I don't have a strong opinion about who qualifies as a LTS and who does not. 

I do know that I sure feel like one.


Offline aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #13 on: April 27, 2008, 02:14:40 PM »
I never did monotherapy. I tested positive in 1985, but maintained adequate T cells until 96 and didn't need meds till then.

I was lucky.

But I can identify completely with the post traumatic stress Doxie mentioned because I lived through years when no meds were available. They weren't even sure what to treat the OIs with, including PCP, MAC, CMV, etc.

AZT wasn't the only experimental therapy being espoused. I remember the blood draining and heating theory, the Interferon theory, the macrobiotic theory, the Chinese herbal medicine theory, etc. I didn't try any of those either.

But had the need arisen, I would have. Hell, I would've gargled with Drano had I thought it would help.

The real terrors for me came when there was no treatment.

People were dropping like flies, or just disappearing because their families whisked them away before anyone could find out what had happened.

I remember the absolute fear of not knowing what was coming next, or when it would come.

I remember being told the only thing I could do was "pack on those pounds" so I would have something to fight with when the time came, which one artless, cadaver of a doctor told me would be two years or less.

At the time, I was a tad thin and, for the life of me, literally, couldn't gain weight.

I remember seriously considering ending my life rather than waiting for the end to find me. It wasn't that I was weak. I was scared out of my wits because I was seeing the end stages of AIDS every day and I was terrified that my turn was next and what that would entail.

This wasn't a fear that lasted a day or two, or a month or two. We are talking years of living in fear that left me numb and in a state equivalent to limbo - not quite heaven, not quite hell, not quite alive.

That is why, even though I didn't take AZT monotherapy, I consider myself an LTS.

HUGS,

Mark
« Last Edit: April 27, 2008, 02:19:50 PM by aztecan »
"May your life preach more loudly than your lips."
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Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #14 on: April 27, 2008, 02:20:58 PM »
Mother Mark, I can identify with every word you said.  I remember a friend of mine who passed from toxoplasmosis in the early 90's also (remember that one).  For years, I didn't clean the cat's litter or dig in the soil without two pairs of latex gloves on.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #15 on: April 27, 2008, 02:33:58 PM »
Yes, toxo. I remember that well. I didn't play in the dirt or clean the cat box for years either.

Now, of course, I garden with wild abandon!  ;)

The article Ray posted by Michael Callen hit a few cords with me as well. Funny he should mention the spirituality issue, considering the banter now ongoing in another forum here.

I think he hit it on the head though when he said LTS's have grit. That is probably the best description I have heard of it thus far.

Grit.

HUGS,

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

Offline OzPaul

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Re: Who Qualifies As a Longterm Survivor?
« Reply #16 on: April 27, 2008, 03:31:35 PM »
I would like to comment on Bear 60's remark of where do us LTNP's fit in. (sorry I don't know how  to use the quote function).

In my mind as someone who has been positive since 1981, I have no doubt that LTS's is absolutely where I belong, despite not having been on meds,  27 years is a long time to live with the bug. I have had and still have ongoing anxiety and depression involving my positive status, my LTNP status not withstanding. The fact that I am an LTNP today does not mean I will always be an LTNP.

just saying
Paul

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #17 on: April 27, 2008, 07:58:56 PM »

In my mind as someone who has been positive since 1981, I have no doubt that LTS's is absolutely where I belong, despite not having been on meds,  27 years is a long time to live with the bug.
just saying
Paul


Absolutely Paul. You do belong here !! After my diagnosis in 1985, I didn't start meds until 2003. So, while I don't have some of the experiences that others speak about, as far as the early meds (AZT), I have known many throughout the late 80's and 90's,( as you have also, I am sure) and know very well their experiences with the drugs.


Take care of yourself----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline OzPaul

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Re: Who Qualifies As a Longterm Survivor?
« Reply #18 on: April 27, 2008, 08:21:14 PM »
Thanks Ray  :D

I've always felt very welcomed by you here at the Forums. Truth be told, I've never felt excluded at the Forums at large nor here at LTS's.

Cheers
Paul

Offline sharkdiver

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Re: Who Qualifies As a Longterm Survivor?
« Reply #19 on: April 27, 2008, 11:00:17 PM »
I
 There are certain things only those of us who have been living with this since the late 80's, very early 90's, can relate to.


This is something I completely agree with. I originally joined AIDSmeds because of the Longterm Survivor forum. For the first time I felt as if I wasn't alone in this world. There were others like me that survived... maybe a bit bruised and battered but we survived. Those who remember what it was like before any meds... only a prognosis of death. Those who saw their friends die a horrible death and wondered and waited ..."Will I be next?" (and sometimes coming close) Those of us that learned to be tough and somehow find the strength within ourselves to carry on.

There are something to those experiences that separate me and my thoughts, my emotions and outlook on life, etc. from the posters in the other forums. I have found community here. I have found people that I don't have to explain what I went through over and over again. I found people here that check in with me every once in awhile to make sure I'm okay. I found people here in LTS that say "yeah, I remember" and that is just enough to give me comfort.

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #20 on: April 28, 2008, 11:15:50 AM »
Its nice to be recognized as a part of the Long Time Survivors forum....I always felt welcome.....I just never was sure how a LTS is defined.
I have a comment about the Michael Callen post:
If you notice, Michael immediately starts talking about people with AIDS as being long time survivors.  In those early years HIV almost always meant an AIDS diagnosis and 6 months seemed like a long time (as he makes note of life span increasing by 6 months).  How far have we come since then!
quote Michael:" Long term survival: first thing to say is that we exist. You might not know it if you relied for your information on mainstream media. According to the US government statistics - which you can believe or not, they are not very well kept, but they are all we have - at least in the US 9% of people with full blown AIDS live 3 years or more, and 5% live 5 years or more. Unfortunately, there have not been significent improvements in median survival since I was diagnosed in 1982. The life expectancy of a person with AIDS has only been extended by 6 months. I personally believe that that 6 months is attributable to our ability to prevent pneumocystis pneumonia, the number one killer of people with AIDS."

I remember meeting Michael here in Philadelphia.  He had an infectious laugh, a good singing voice  and a great sense of humor.  Its too bad he didnt survive to be a part of whats happening today. Remember the CD he put out?
Poz Bear Type in Philadelphia

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #21 on: April 28, 2008, 02:23:28 PM »
Furthermore, the point of this forum is NOT to create some sort of social clique based on a fabricated desired VIP status.  There are real reasons behind it, and it's actually quite insulting that others may view that any of us want to be in this god forsaken category.  Seriously.

Exactly!  I think Philly and I pretty much agree on our "definitions".
And thanks Ann for your comments, regarding a little respect.   It's not as if we are demanding to be recognized in some special way, but it just seems to me that common sense and a little courtesy go a long long way.

I don't think any of us have ever 'pounced' on someone who posted here that we feel "didn't belong", at least I hope we haven't.

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 AndyArrow

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Re: Who Qualifies As a Longterm Survivor?
« Reply #22 on: April 29, 2008, 04:18:11 AM »
I have always felt reluctant to post in here.  Although Philly, told me since I had been diagnosed many moons ago and am currently on Fuzeon (how I hate needles) I qualify.  Everyone here has been very kind to me.

The thing that strikes me the most is how much healthcare workers have changed.  I remember before being in the hospital with people wearing gowns over their scrubs, face masks, rubber gloves and head coverings.  They looked more like astronauts than nurses.

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

Offline MarcoPoz

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Re: Who Qualifies As a Longterm Survivor?
« Reply #23 on: April 29, 2008, 10:50:51 AM »
Hmmm...great question.  I too remember taking handfulls of those nasty blue and white stomach razors called AZT.  Could be the burn also came from the Scotch I chased them with back then  ;)

I'm not sure if I 'qualify', but I look at it this way.  I began volunteering then working in HIV about 3 years after my diagnosis.  I took pictures of everyone and everything and built up quite a 'rogues gallery' of other pozzies.  I began placing these pictures on my office wall.

One day I began feeling even more stressed than normal.  Had one of those panic attacks that people talk about--I just couldn't figure out why--then I looked up.  The wall had become a memorial.  A 8 foot by 8 foot memorial of dead people...my friends, collegues and clients.  When I started working in HIV I did it like so many others--to give back to those who had helped me in my early confused days.  Now it seems that I was serving more ghosts than live beings.

So...........

I took down all my pictures of all my sweetly loved friends and was lucky enough to be able to travel to the AIDS Memorial Grove in San Francisco. 

I piled up the pictures in the middle of the circle--lit a candle..said a prayer...meditated then touched fire to the snapshots.  As they burned--I prayed for my friends...and then traveled home in peace.

-Marco

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #24 on: April 29, 2008, 07:11:34 PM »
What a great story Marco!

A group of us from AIDSmeds visited the Grove last summer; we held a very moving memorial service there, using flowers in much the same way you used the photos.

I have very few photos of my "sick years".   I wouldn't let anyone come around with a camera.   I did dig out a few recently, one of me taking a home pentamidine treatment.   Ahh, those were the days......NOT!    ;D
"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 aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #25 on: April 29, 2008, 07:22:13 PM »
Hey Marco,

Welcome to the forums and what a great story!

I was with Alan at that ceremony last year. It was very moving for me and your rendition of your experience helped bring that back to me.

HUGS,

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

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #26 on: April 29, 2008, 09:01:28 PM »
That's a really good story, Marco.  I used to have pictures of friends who visited an unveiling of the Quilt when it was in Washington, back in, was it 1991 I think?

I have a picture of myself (only one) when I had started to recover from wasting, but I think I only weighed like 95 in the picture (I had gotten down to 80 lbs).  All other pictures are gone, lost when a house I was living in had the main pipe break in the basement.  But, I do have my memories.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #27 on: April 29, 2008, 09:40:47 PM »
It was a delight to have a big red sign posted on my hospital room door cautioning those who entered to wear mask, gloves, gown, eye protection and face shield. Take percaution against blood borne pathogen exposure.

This was after delivering my baby...

Offline redhotmuslbear

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Re: Who Qualifies As a Longterm Survivor?
« Reply #28 on: April 29, 2008, 10:12:00 PM »
It was a delight to have a big red sign posted on my hospital room door cautioning those who entered to wear mask, gloves, gown, eye protection and face shield. Take percaution against blood borne pathogen exposure.
This was after delivering my baby...


Sounds like the big biohazard symbol that was posted outside my hospital room in December 1994 during a stay for brain surgery.  I never saw it.  My partner and family thought nothing of it after visiting a number of friends with AIDS over the years.  And the doctors never told me that I had tested positive after the surgeon cut himself while operating.  They were more civilised than to resort to masks and face shields, though, and latex gloves were already required.

Bastards.


Namaste,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline netta

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Re: Who Qualifies As a Longterm Survivor?
« Reply #29 on: April 30, 2008, 12:31:25 PM »
I remember back around 1984 when my boyfriend was in the hospital sick, the docs and nurses suited up with mask and all and caution signs all over the door,but no one made me suit up when I came to visit him , I always asked what was his daignosis, and no one told me he had Aids, not even him, I guess they thought I was going to die next anyway. He took the secret to his grave. I also remember AZT and how I could never tolerate it, so I stop taken it. I use to save my friends obituaries, many of my friends died because of aids and then I had to stop, it got too depressing. Betty, I also have a picture of myself I keep, when I weight only 95 lbs. People don't recognize me in the picture.Hell I don"t recognize me!!! Through it all, I am thankful I am still here and able to share with other LTS after 20+ years.
« Last Edit: April 30, 2008, 12:41:19 PM by netta »
"to thine own self be true"

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #30 on: April 30, 2008, 05:15:21 PM »
Yep that would be the sign David.

I recall my husband blocking the sign with his body when my family visited. We hadn't told anyone we where HIV positive yet.

Offline heartforyou

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Re: Who Qualifies As a Longterm Survivor?
« Reply #31 on: May 02, 2008, 06:52:23 PM »
Quote
The overwhelming majority of long-term survivors had somehow managed to resist the enormous pressure to take AZT.

That is exactly what my best friend and medical doctor told me in 1987: do not take any medication yet. Although my HIV doctors did everything to have me started on AZT,  I did not start to take any meds until I got PCP until 1995.

I took AZT for one year and it was the cruelest, most nauseated time of my life... but... it just kept my head above water until the PI's came in....

So, I do agree with that quote...

love

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #32 on: May 02, 2008, 07:00:57 PM »
 Being a long term survivor and the effects its had on me is better shared with others that have also been there . There is many things I would never share if I thought people newly diagnosed
with HIV may read . Some things we longtimers endured would only add to the anxiety that newly diagnosed people already feel .

I have never been to war but I do have battle scars from  26 years of living with aids .

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #33 on: May 02, 2008, 07:25:23 PM »
The overwhelming majority of long-term survivors had somehow managed to resist the enormous pressure to take AZT.

That is exactly what my best friend and medical doctor told me in 1987: do not take any medication yet. Although my HIV doctors did everything to have me started on AZT,  I did not start to take any meds until I got PCP until 1995.

I took AZT for one year and it was the cruelest, most nauseated time of my life... but... it just kept my head above water until the PI's came in....

So, I do agree with that quote...

love

Hermie

I was never able to tollerate AZT so being pig headed me I wouldn't take it reguardless of what the doctors told me.

Years later when they where looking to change my meds they tried me out on Trizivir. (AZT/3TC/Abacavir)
I got super sick. My hemoglobin was down to 7. Normal is something like 12 to 18.

So no more AZT for me. No sir, no how, no way.

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #34 on: May 02, 2008, 07:35:12 PM »
I tried AZT in the early 80's . Some one correct me or refresh my memory but I was supposed to take hand fulls of it at a time  I think .I remember freaking out and thinking that I was going to die just from the side affects . I quit taking it after 2 weeks and tried to come to terms with the fact that I was going to be sick with no options for treatment . I was lucky to live long enough until better treatments were available . 

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #35 on: May 02, 2008, 07:43:03 PM »
I cant recall the exact number but it was alot. I hate taking pills but I've gotten better at it and I'm more mature than I was then.

slightly LOL

Offline OneTampa

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Re: Who Qualifies As a Longterm Survivor?
« Reply #36 on: May 03, 2008, 06:45:11 PM »
I came to this site after Googling "long term HIV survivors".  I was curious about how others managed their lives being HIV+ for many years. I must say I am so glad I found this site.  I've learned a lot from others and about myself these past 22 years HIV+.

And yes, I took AZT (originally a cancer drug that had been around for years) as  it was the only medical regimen available to treat HIV at the time in the 80s. So I guess I join others at he extreme end of the definition of long term survivors although there are others who have survived much longer.  I guess we all have heaping portions of "grit" and "luck" to still be here.

"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Online Dachshund

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Re: Who Qualifies As a Longterm Survivor?
« Reply #37 on: May 03, 2008, 07:33:37 PM »
I tried AZT in the early 80's . Some one correct me or refresh my memory but I was supposed to take hand fulls of it at a time  I think .I remember freaking out and thinking that I was going to die just from the side affects . I quit taking it after 2 weeks and tried to come to terms with the fact that I was going to be sick with no options for treatment . I was lucky to live long enough until better treatments were available . 

For the life of me I can't remember how many pills it was either. I do remember that after two weeks I stopped the AZT and told my doctor I would rather be dead. Stopped seeing my doctor and went on a multi-year bender, the coke and beer seemed to work rather well until Viracept came along right in the nick of time because I was dead man walking.

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #38 on: May 03, 2008, 07:37:32 PM »
I tried AZT in the early 80's . Some one correct me or refresh my memory but I was supposed to take hand fulls of it at a time  I think .

Having never taken AZT, I can't remember how much AZT was taken. If I can remember correctly, The dose was 1200mgs, A friend of ours ( that has since passed on) was taking it ( I believe ) Five times a day back in the late 80's.

EDITED: I did take AZT in Trizivir, back in early 2004, but was only on it a month. Couldn't handle it, and work at the same time.

Ray
« Last Edit: May 03, 2008, 08:14:37 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #39 on: May 03, 2008, 08:17:33 PM »
 I was just reading over these post and had an AZT flash back ....I could almost taste that awful metallic taste that never went away until I was off that stuff for weeks .

Offline Catman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #40 on: May 03, 2008, 10:20:03 PM »
 This topic has brought back memories that I had long ago thrown in the basement of my memory. I almost had totally eliminated each detail of my beginnings with hiv and that dreadful AZT. Yep, I took it, too. Back in 1986 I think it was, maybe a little later. AZT really made me feel so terrible that after a few months on it I quit it on my own will, stopped going to doctors for treatments and just waited to die. I didn't. I got a job and literally dived into it and almost forgot I had hiv until 1993 when I got pneumonia and did have to go see a doctor again. He is still my doctor today. By then new medications were out and I started with Zerit and something else like Crixivan or Viracept. I don't even remember because I've been through all the meds until none worked. Now I'm on Fuzeon, Aptivus and Norvir. Everything is fine and normal and my life and health is as normal as any hiv-negative person. I've become "undetectable" only with my actual combination of meds. I consider myself to be a long term survivor because being hiv positive and still kicking has not been a walk in the park especially when many of us suspected or knew we were positive even when no meds were available back in the 80's. I'm really at awe today at those cases that have been + since the 80's and are not sick nor taking meds! Do I wish I was one of them... :-*
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #41 on: May 05, 2008, 11:54:54 AM »
I don't remember the exact dosing....but what I DO remember is that damn pill box alarm going off ALL the time, because you were 'supposed' to take it every 4 hours.

I was one of the ones who took that awful, toxic drug (as prescribed!) and lived to tell about it.   I hate AZT.  It made me so sick.   I remember sitting at work, sweating and extremely nauseated..yet having to put on that "nothing's the matter" face, because (1) no one knew (2) we were afraid of losing our jobs/insurance if someone found out.

1988-96 were some really tough years for me, and AZT was a major factor in that.
"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 heartforyou

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Re: Who Qualifies As a Longterm Survivor?
« Reply #42 on: May 05, 2008, 02:30:00 PM »
Quote
1988-96 were some really tough years for me, and AZT was a major factor in that.

Sweet classmate of 1987.

You are one of the very few to have taken the drug and still be able to talk about it.
I am pretty sure AZT killed most of our friends back then.

Do you also remember the anemia??? not being able to walk... or even worse, climb stairs.
I worked in a fitness club back then... Imagine putting up a "hi, how are you today -smile " and pretending you were in the best of health.
While every 5 minutes the content of your stomach desperately wanted to come out.....

Oh honey.....

I am so glad you are still amongst us. You understand.

love
Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline leatherman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #43 on: May 05, 2008, 04:12:09 PM »
I remember setting an alarm for every four hrs day AND night to swallow azt capsules (4 at a time I think it was) back in 92-94. It kept me so sick (though it did cut the viral load some) that it was killing me faster than my partner was actually dying from "wasting syndrome", so I quit taking it so one of us would be alive to bury the other one.

Ever since then, I've been on some type of "salvage routine", usually with no other meds available. But I survived PCP and pnuemonia along with side effects from nearly every med I've taken. Luckily, my latest regimen has worked for several years (only makes me puke 4 times a month), and I have at least 4 options if my recent non-compliance has made resisitance build up again.

However, I can't comment on PTSS. I lost a partner after 10 yrs in 1994 to AIDS, and I just lost my partner of 7 yrs (20 yrs as friends) at the start of this month to AIDS. I'm still living the "stress syndrome" and not to the "post traumatic" part yet.  ;)

mikie
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Offline draco

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Re: Who Qualifies As a Longterm Survivor?
« Reply #44 on: May 05, 2008, 04:59:17 PM »
I'd probably add "and was on meds before PIs" but I'd get a bit of crap from people.  Seriously though, I've noticed in my "meat life" long term survivor monthly support group here in Philly that the primary raison d'Ítre seems to be a shared sense of side effects from being on pre-HAART regimens. 

Yes, there are shared accrued mental issues for those of us suffering in excess of a decade of infection (or so...) but what I just described above seems to actually be the primary cause of seeking refuge among like-minded (or rather experienced) sufferers.

In the 1990s I attended a support group for HIV infected men and was the only drug-naive man there, ever, in over 3 years.  I concur with your assessment and won't give you any crap.  Everyone accepted me but I could only empathize with many who were going through hell while I was waltzing along.   I stopped attending in part to feeling "unqualified" to be in the group.  I was an AIDS dilettante.

Now that I am in the select HAART group my life is still a relative breeze.  The first regimen I tried has worked since 2004 and the side effects lasted a couple of weeks.  I am almost a year overdue for blood work but remain optimistic my viral load is undetectable and my CD4s high enough to keep me well.  I'm cockeyed too.

Drac

Offline Peter Staley

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Re: Who Qualifies As a Longterm Survivor?
« Reply #45 on: May 05, 2008, 05:38:25 PM »
I am pretty sure AZT killed most of our friends back then.

Hermie -- I respectfully disagree.  All the experts I've talked to over the years claim AZT never killed anyone.  Yes, at its original dose (or OVER-dose!) of 1,200mg/day, it frequently caused anemia, and for many people, ongoing GI issues, including nausea, and fatigue.  It also became a political football, and ended up with a bad rap.  When it didn't save lives as a monotherapy like everyone had hoped, some activists and fringe doctors started saying "AZT kills," even though there is nothing in the literature about AZT causing deaths.

The good news is that at its current recommended dose, 600mg/day, it's a much more tolerable drug, and rarely causes anemia.  Even so, there are better nukes now, and I wouldn't recommend it as a first-line therapy.

Peter

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #46 on: May 05, 2008, 06:47:58 PM »
Oh, I remember taking those god-awful AZT pills in 1990 and having my hemoglobin drop to 2.  That was awful, but I agree with Peter.  I don't believe AZT "killed" anyone.  I'm just really grateful treatment has improved.  Otherwise, I'm sure most of us wouldn't be here to reminisce.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline MarcoPoz

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Re: Who Qualifies As a Longterm Survivor?
« Reply #47 on: May 08, 2008, 10:52:01 AM »
Yikes!!!!  Is it cool to admit that I'm STILL on my FIRST regimine that I started in in '95 and it STILL includes AZT? (I waited a few years because I was smart--or in denial--or drunk--or something)

Cd4's--790  39%
VL Undectable since 96

non-protease combo of combivir (AZT & 3TC) and viramune.

Offline Peter Staley

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Re: Who Qualifies As a Longterm Survivor?
« Reply #48 on: May 08, 2008, 10:58:13 AM »
Congrats, Marco!

Just more evidence that AZT always had a bad rap.  Isn't it interesting that no one ever said "Combivir kills"?  It was the number one selling AIDS med for many years after the HAART era started, and no one ever said Combivir was killing thousands of people (except HIV denialists).  Combivir contains AZT.

Peter

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #49 on: May 08, 2008, 06:19:27 PM »
Yikes!!!!  Is it cool to admit that I'm STILL on my FIRST regimine that I started in in '95 and it STILL includes AZT? Cd4's--790  39%
VL Undectable since 96



Yes it is !!! Great numbers, and on the same regimen !! Continued success!


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #50 on: May 09, 2008, 10:39:49 AM »
I am so glad you are still amongst us. You understand.

I certainly do understand Hermie.   Love & hugs to you, always...

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 kayakinteddy

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Re: Who Qualifies As a Longterm Survivor?
« Reply #51 on: May 10, 2008, 10:06:39 PM »
Nice to see all of you here!  Been wondering where you were hanging out...

I was diagnosed just as the PI's were hitting the market, but lived in a remote part of Canada w/o access.  The Michael Callen article rings true and brings back memories.  I, too, remember those f***ing signs on hospital room doors when I would visit friends.  Got thrown out of Yale for removing them and reposting them on the nurses station- no sense of humor there!  I could do w/o remembering cooling my face off on the tile floor in the bathroom where I spent far too much time getting sick due to AZT. 

Had 33 T-cells up until 3 years ago.  Couldn't tolerate most of the early meds side effects and on many levels never felt like I had much to fight for.  Then I found the courage to transition from female to male and poof, suddenly I cared if I grew old.  Now living as male and having a great time.  I have 400+ T-cells and a whole lot of chest hair.   ;D  Apparently liking oneself plays a huge roll in survival... at least in mine it did.

Pleasure to meet all of you...
teo

If we seek a just world, we must work to create a merciful one.

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #52 on: May 10, 2008, 10:11:01 PM »
welcome to the forums Teo.... Nice to meet ya
« Last Edit: May 10, 2008, 10:14:57 PM by jg1962 »

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #53 on: May 10, 2008, 10:13:08 PM »
Welcome to the forums, Teo.  Hope to hear more from you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: Who Qualifies As a Longterm Survivor?
« Reply #54 on: May 11, 2008, 02:15:12 AM »
Greetings teo,

There are a lot of very friendly and helpful people here.  I hope we read more from you.

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

Offline Peter Staley

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Re: Who Qualifies As a Longterm Survivor?
« Reply #55 on: May 11, 2008, 08:50:30 AM »
Welcome, Teo!  Glad you found our site.  Your story sounds very inspiring, and I hope we hear more from you going forward.

Peter

Offline J.R.E.

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Re: Who Qualifies As a Longterm Survivor?
« Reply #56 on: May 11, 2008, 04:59:21 PM »
Hello Teo,


Welcome to the forums. It's good to hear from ya !


All the best-----Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline MarcoPoz

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Re: Who Qualifies As a Longterm Survivor?
« Reply #57 on: June 09, 2008, 01:35:37 PM »
Ok anyone want to reminisce about the good ol' days of DDI?  After trying unsuccessfully to stay on DDI for 3 months--and bitching to my doc about it, he ACTUALLY tried a tablet (about the size of a Necco Wafer then--but coated in battery acid).  It took him all of about 2 minutes before he blew chow and agreed we'd have to 'find something else' for me ;-)  Gods--I LOVED that doc!   

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #58 on: June 09, 2008, 06:19:12 PM »
LOL he actually took one huh?  too funny

Offline MarcoPoz

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Re: Who Qualifies As a Longterm Survivor?
« Reply #59 on: June 10, 2008, 09:28:39 AM »
He TOTALLY tried one!  I was bitching--he said "you'll adjust"--I said--YOU take one then, so he did!  This same doc used to give me prescriptions for "A day at the library", "A day flyfishing", "An hour extra sleeping in" and a few other self-care kinds of things because he thought I was lousy at stress reduction and that I worked too hard.

Because of him, I now judge all my caregivers by how easy it is to REALLY talk to them.  Keeps me open and honest and hopefully pulls them outta their shell too.

I run a training program for physicians and nurses to assist them in discussing prevention issues with their HIV positive patients.  It's a real hoot to see them crossing that bridge from really wanting to be useful in a 'scary' area, to being comfortable discussing sex ;-)

I like to think that my interaction with my first ID doc helped move me to do this kind of work.

Offline Jeffreyj

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Re: Who Qualifies As a Longterm Survivor?
« Reply #60 on: August 04, 2008, 12:06:24 AM »
I think Any one who thinks they are an LTR , they are an LTR.
I am happy to see the group is growing! Go US!
Positive since 1985

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #61 on: August 04, 2008, 06:08:10 PM »
ddI is one I never took.  But ddC -- yikes.   I was on a clinical trial with it in 1992, I believe....so was taking that plus AZT.   The damage it did to my feet was incredible.

For several years, the only shoes I could wear were those cheap slip-on rubber soled tennis shoes ("Deck shoes") but not NICE deck shoes, like TopSiders....these were the Wal-Mart / Target kind.

My feet are still damaged, but the nerves have regenerated somewhat over the years....I'm very lucky.   They still give me a pretty good bit of trouble, but it's mostly related to DVT issues, and not the PN.

I used to LOVE shoes.   I had a zillion pair.   Little sleek European loafers...kilties...tassles...penny loafers.....bucks....wing-tips.....  Lord, now when I buy shoes it is a 'gamble', because I really cannot tell by trying them on in the store if I will be able to actually wear them.   I have about a 50-50 track record.   I lucked up this weekend and bought some kiltie tassle loafers, and I actually WORE them to work today (and can still walk!)  So it's a banner day here....LOL.     I grew up wearing (and LOVING) Bass Weejuns.   I bought me some a few months ago....if I built myself a pair of sandles from barbed wire and razor blades, they could not hurt any more than those Weejuns.   Just cannot wear them now.  :'(
"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 BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #62 on: August 04, 2008, 06:21:37 PM »
Alan, I used to love to wear high heels, but with my PN and broken kneecaps, I can't even stand in them.  (plus, I'm 5'9", so why was I wearing them in the first place; to strip I guess). ;)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline hivsweden

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Re: Who Qualifies As a Longterm Survivor?
« Reply #63 on: August 04, 2008, 06:36:31 PM »

The good news is that at its current recommended dose, 600mg/day, it's a much more tolerable drug, and rarely causes anemia.  Even so, there are better nukes now, and I wouldn't recommend it as a first-line therapy.


For me 600mg/day caused anemia, but switching from Combivir to 400mg AZT + 300mg Epivir worked just fine for more than eight years except for some signs of wasting and elevated cholesterol levels. I understand that people who have experienced the AZT monotherapy are negative, but the drug certainly has its uses in a HAART regimen.

Offline Catman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #64 on: August 04, 2008, 07:27:23 PM »
  (plus, I'm 5'9", so why was I wearing them in the first place; to strip I guess). ;)

LMAO!  :D  Thank you for making me laugh today, Betty! I didn't expect a comment like this to pop up on this thread which I was taking too seriously.
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #65 on: August 04, 2008, 09:36:21 PM »
Catman, didn't you know Betty is our stripper with a heart of gold?   LOL   she really IS !   ;D

Betty, I used to wear high heels myself....but that's a WHOLE different story!
(yes I did drag for a short stint in the late 70's)  I've showed my pics to some (Herman for one)  He got a kick out of seeing Veronica Rush.....me at 6'2" wearing 5" sandals....(size 13)  LOL

I have some pretty good "glamour" shots; fun to look back on.   When I was wild, young, crazy, innocent (kind of) and we had never HEARD of AIDS.

 :-*

[attachment deleted by admin]
« Last Edit: August 04, 2008, 09:38:13 PM by AlanBama »
"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 minismom

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Re: Who Qualifies As a Longterm Survivor?
« Reply #66 on: August 04, 2008, 09:56:14 PM »
Mini was on DDI, but it was liquid form.  It came as a powder, but the pharmacist had to mix it with Malox before we picked it up.  Mini liked the black cherry flavor..LOL.  When she did her 5mth stent in the hospital, a class of student nurses was assigned to patients.  Part of their assignment was to take whatever oral meds the kids had to take.  At that time, Mini was on liquid Kaletra, Zerit, and powdered Viracept.  We mixed the Zerit and Kaletra then added milk.  When I mixed the student's dosage, the head nurse wouldn't let me cut with milk.  That poor girl turned a lovely shade of green.  She came back 2 days later and told us that food still didn't taste right. 

Mum  (of course I laughed at her!)

ps: great picture, Alan :-*
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Offline nicensea

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Re: Who Qualifies As a Longterm Survivor?
« Reply #67 on: August 04, 2008, 10:09:30 PM »
Greetings All, 8)

I'm brand new to this forum. Been poz since '88, seeing the devastating effects of the epidemic while living in SF. So, I've seen a lot, been thru a lot, and lost soooo many friends & a lover that I stopped counting. :'(
Ah....the days of AZT brings back non too pleasant memories. I'll leave it at that: been there, done that.

Ciao for now,
Michael

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #68 on: August 04, 2008, 10:24:48 PM »
Va va va voom Alan

You looked like a living doll.  ;D

Much more attractive than my late husband in drag. Poor thing looked like his mother.  :P

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #69 on: August 04, 2008, 10:35:57 PM »
Wendy, here's the "2000" version.....we had a 25th reunion of all former Miss Vulcan's (camp drag pageant) in Birmingham.....

I look like Ann Miller on steroids..... LOL

definitely too old for this foolishness (and this was 8 years ago!)

When my older brother (also gay) saw this, it scared him because he said I looked so much like our Mother!   I'm sure she never wore so much paint or curb-feelers (eye lashes)  LOL

[attachment deleted by admin]
« Last Edit: August 04, 2008, 10:51:32 PM by AlanBama »
"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 Matty the Damned

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Re: Who Qualifies As a Longterm Survivor?
« Reply #70 on: August 04, 2008, 10:57:21 PM »
Alan,

You are seriously oozing fabulous in that shot, darling. :-*

MtD
(Who loves a classy DQ)

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #71 on: August 04, 2008, 11:35:55 PM »
I posted these on a whim; will probably regret it later on, Matty!  LOL

Fun to look back and laugh; hard to believe that was me (esp the 1979 one).
I did some stupid stuff, but wouldn't trade those carefree fun times for anything.....

hugs & kisses,

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 BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #72 on: August 05, 2008, 07:18:38 AM »
Alan, you look wonderful in both those pictures!  Wow.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online Dachshund

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Re: Who Qualifies As a Longterm Survivor?
« Reply #73 on: August 05, 2008, 08:14:32 AM »
Nothing beats a Southern drag queen. You still look like you can fit in a six Miss Thing. You look divoon dahling.

Aunty D

Offline penguin

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Re: Who Qualifies As a Longterm Survivor?
« Reply #74 on: August 05, 2008, 08:23:25 AM »
oh yes  :)

kate (useless with make-up of any description)

Offline Matty the Damned

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Re: Who Qualifies As a Longterm Survivor?
« Reply #75 on: August 05, 2008, 08:24:29 AM »
Patsy Cline.

That's who Alan reminds me of in the last shot. Miss Patsy Cline. :)

MtD

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #76 on: August 05, 2008, 09:57:48 AM »
It was 2000, we were having our Miss Vulcan 25th Reunion Show in Birmingham....my friend Jack worked at the Julia Tutwiler (classy hotel) and set me up there.   When it came time to go out to the club, I thought I could 'slip' out unnoticed...but they were having a HUGE wedding reception in the lobby.   I had to stroll through there in cocktail drag.   :D

Thanks Matty, Betty and Aunty, but I think the "divoon" has slipped more into "baboon" for poor old VR   :'(

We had a great time that night.    Saw people I had not seen in over 20 years, and a good majority of them thought I was dead anyway!   Surprised the hell out of them when I took the stage, doing "Happiest Girl in the Whole USA" by Donna Fargo.....LOL
« Last Edit: August 05, 2008, 09:59:46 AM by AlanBama »
"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 Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #77 on: August 05, 2008, 11:10:08 AM »
Still quite the beauty  ;D

Offline Catman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #78 on: August 05, 2008, 08:20:56 PM »
Catman, didn't you know Betty is our stripper with a heart of gold?   LOL   she really IS ! :-*

 Alan;
     I thought Betty said that comment of her high heels as a joke! Then when I read your reply to my comment and I saw the picture you posted I thought that was HER with a late 70's look! Lol. I sort of got lost with the flow until reading all the replies and sorted the whole thing up ??? I did get confused. But, I do agree with MtD, you did remind me of Patsy Cline!  ;D You must of had a blast back then!
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #79 on: August 06, 2008, 10:35:42 AM »
Alan honey, you look fabo! ;D Both photos are great.

I tried drag once. It was Halloween. Good thing, too, cause I was SCARY!

I looked like a cross between Ethyl Merman and Charles Manson. Not pretty.

Ah, those memories.  ;)

HUGS,

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

Online Miss Philicia

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Re: Who Qualifies As a Longterm Survivor?
« Reply #80 on: August 06, 2008, 10:43:20 AM »
Wow.  How did I miss this "dripping with win" turn of events in this thread?
"Iíve slept with enough men to know that Iím not gay"

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #81 on: August 06, 2008, 11:10:55 AM »
Philicia....we assume you know that drag helps one survive the trials and tribulations of being just another tired old AIDS infected queen. Why just last week...oh never mind.
Buffy
Poz Bear Type in Philadelphia

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #82 on: August 06, 2008, 11:31:11 AM »
When I was bartending at a local gay bar they had turnabout night , the drag queens dressed as men and the bartenders had to do the drag shows .

I was so ugly the drag queens named me Amber Alert .

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #83 on: August 06, 2008, 11:43:25 AM »
jg
Thats hilarious...lets do it. Winni and Mum will be the (gay) men and do "drag king" and we will be drag queen versions of winni and mum...lulz ::) ::) ::)
Poz Bear Type in Philadelphia

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #84 on: August 06, 2008, 11:50:06 AM »
 LOL Bear... I took allot of vodka to get me up on that stage , I don't think I could stand the hangover at this ripe old age .

Offline rondrond

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Re: Who Qualifies As a Longterm Survivor?
« Reply #85 on: August 06, 2008, 12:36:25 PM »
LOL Bear... I took allot of vodka to get me up on that stage , I don't think I could stand the hangover at this ripe old age .

I'll do your hair....I had lot's of practice doing big hair with Granny....
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #86 on: August 06, 2008, 12:43:50 PM »
I'll do your hair....I had lot's of practice doing big hair with Granny....

Ill need two hairdo's , I wear short skirts  :o

Offline rondrond

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Re: Who Qualifies As a Longterm Survivor?
« Reply #87 on: August 06, 2008, 12:48:15 PM »
Ill need two hairdo's , I wear short skirts  :o


..double edge or electric?....
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Online Jeff G

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Re: Who Qualifies As a Longterm Survivor?
« Reply #88 on: August 06, 2008, 12:51:17 PM »

..double edge or electric?....

Weed eater , I told ya I was ugly. ::)

Offline rondrond

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Re: Who Qualifies As a Longterm Survivor?
« Reply #89 on: August 06, 2008, 01:08:38 PM »
Weed eater , I told ya I was ugly. ::)

  ;D
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline lipoenvy

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Re: Who Qualifies As a Longterm Survivor?
« Reply #90 on: August 08, 2008, 02:07:57 AM »
Call me sheltered, but I had never heard false eyelashes referred to as "curb feelers."  I just about fell out of my chair when I read that.

lipoenvy

***************
"We're spending like drunken sailors, but we're not even getting the hookers and booze."  --Charles Wheelan, "Liberal Spending. No Social Perks:  Call It Neo-Neo-Conservatism"

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #91 on: August 08, 2008, 10:31:07 AM »
Oh lord yes honey; I used to wear 3 pairs of curb feelers on top, and either 1 or 2 on bottom (yes, they make BOTTOM false eyelashes)     I was 'old school' on a lot of drag technology.   Nowadays, they're all about being "real"; the most recent shows I've seen, they try to get up on stage in as little as possible (and most of them have NO business trying to go nude).
We wore bird seed bags (made of old nylon hose) for breasts.   Glued our fingernails on with Crazy Glue.   You talk about a mess....

In that first shot (1979) I weighed 135.   
"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 Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #92 on: August 08, 2008, 10:26:04 PM »
jg
Thats hilarious...lets do it. Winni and Mum will be the (gay) men and do "drag king" and we will be drag queen versions of winni and mum...lulz ::) ::) ::)

'LOL too funny.

When I met my late husband he was living with a couple of guys one of which was a drag queen.
I havent thought of them in a while. Gosh I just realised I cant remember if I know thier names.
How terrible is that?  I cant remember the drag name either.  :-\

One was Ron maybe? I'll have to think about it.

anywho they where nice... I hope they are still alive.

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #93 on: August 09, 2008, 08:30:31 PM »
I remembered their names just a couple of hours later while I was washing my hair.  ;D

Offline heartforyou

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Re: Who Qualifies As a Longterm Survivor?
« Reply #94 on: August 12, 2008, 09:21:11 AM »
OHHHHHHHHHHHHHH ALAAAAAAAAAAAAAAAAAAAAAAAAAAAAN

You just made my day.
I would have given eveything to see you perform on stage... you looked so glorious... wooooooooooooooooooooooooooooooooow

thnx for posting this honey

love

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #95 on: August 12, 2008, 12:24:04 PM »
Hi Everyone, Well I consider myself to be a long term survivor because I can pinpoint when I got infected which was back in 1980,,, I was an addict but I never shared needles, I always had a new one and after a year of using I got clean and went to Puerto rico and got back together with my wife and all was well ( Health wise ) until our break up in 1988, I then went to join the Army but I had a realy bad cough and the doctor told me to get better and come back in 2 weeks but before the 2 weeks were up my wife told me that she was using in California so I took a plane out there to go get my Daughter, that's when the Army told me that I was HIV+, so I could not join and then it blew my mind because I remembered when I got clean at the hospital and there was this young man that had Aids and was Dying, Now at that time I had no Idea what was Aids so I would sit and talk to him until one day I was told that he had passed away.. so I freaked out and started using Crystal Meth with my wife, now I must say that I never got sick and i did start Meds right away so my T-cells for the longest stayed around 500+ but then in 2001 my marriage was over and I started to use more and more and finally I got so tired of using that I tried to take myself out with an over dose of pills and I shot up a gram of Crystal Meth, I ended up in a coma for 14 days my T-cells were 6 and my viral load was 400,000 + and I weighed 99 Lbs, I was dying and I was wanted by my PO so when they were going to release me it was the PO's office that was coming to get me but thanks to a case worker I knew He got me into a Rehab program which saved my life and now in 2 Days I will have 6 years clean, I have been Undectable for the last 5 years and I feel great...
I guess what I'm trying to say is that if you want to live a long life you have to do a few things,, First of all take your Meds , second see your Doctor and most important of all STAY OFF DRUGS, they will only hurt you..
I will say that at times I get really lonely but someday I'll meet that woman
ok bye for now with much love and respect always PRMike
PRMike

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #96 on: August 12, 2008, 08:49:56 PM »
PRMike, again, congratulations on 6 years!  Don't look back.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Catman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #97 on: August 12, 2008, 09:29:05 PM »
PRMike, My God what a story! You are one of the lucky ones to have regained your health. Don't take it for granted and don't go back to drugs because you may not be so lucky the next time around. Continue to focus on the better things in life but don't fall back. "Adelante siempre, hombre!"
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #98 on: August 12, 2008, 10:15:32 PM »
PRMike, again, congratulations on 6 years!  Don't look back.
Hi Bettytacy, thank you and I will not look back but I aslo will never forget where I came from .. ok so long for now as always your Friend PRMike
PRMike

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #99 on: August 12, 2008, 10:19:40 PM »
PRMike, My God what a story! You are one of the lucky ones to have regained your health. Don't take it for granted and don't go back to drugs because you may not be so lucky the next time around. Continue to focus on the better things in life but don't fall back. "Adelante siempre, hombre!"

Hi Catman, yeah that is just part of my story but I am glad that I got a second or should I say what I feel was my last chance to learn to live with out Drugs and I must say that i'm glad I took it... SI siempre para Adelante y Nunca para atras...
PRMike

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #100 on: August 13, 2008, 09:50:29 PM »
Hi Bettytacy, thank you and I will not look back but I aslo will never forget where I came from .. ok so long for now as always your Friend PRMike

Staying clean for me is like driving a car-sometimes I have to look in the rear view mirror or I'll get hit by something; but I can't stare at the mirror, or I'll crash. :)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline SteveA

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Re: Who Qualifies As a Longterm Survivor?
« Reply #101 on: August 14, 2008, 12:01:20 AM »
I remember AZT and my diagnosis that was given to me on my birthday in 1989. I'm certain that I was HIV positive for at least two years before that diagnosis because of all the sick time I took from my job loading and unloading airplane luggage compartments in the Houston/Nashville heat! I wasn't given much time by the asshat who gave me my diagnosis in Nashville either but I survived AZT from 1989 til 1993 when I left Nashville for Saint Louis and got a new doc and new meds, DDI & DDC.

I also fondly remember coming down with MAC in 1996 and ending up in the hospital with 8 T-Cells running fevers of 108 and being so manic that the nurses couldn't believe I was sitting up talking at all. It was at this time that my doctor told me it was time to stop trying to work and that I should take disability. I also remember asking my mom to have our pastor come to the hospital to pray with me and being told he wouldn't come until I "Turned from my sinful lifestyle". I'm pretty sure I survived MAC just to spite him and prove that God loved me in spite of how some of the people who claimed to believe in him felt about me!

These days I'm undetectable and most of my suffering is from the PN from so many years on Nukes, high triglycerides, high cholesterol and Type II Diabetes from the PI's and kidney stones from a genetic predisposition to high uric acid levels from my mom's side of the family.

While I totally agree with Andy that people should respect LTS, I have to go the extra step and say that I think people should respect EVERYONE in these forums! Respect should go both ways here. Just because some of us have "Been there, done that" by no means does it give any of us license to disrespect the newly diagnosed or turn noses up at people who haven't been where we've been.
« Last Edit: August 14, 2008, 12:03:55 AM by SteveA »

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #102 on: August 14, 2008, 11:31:35 AM »
Oh yeah, I agree everyone should be respected. I doubt anyone would really argue with that.

But to analogize you could say that a person that has been driving a car daily for the last 20 years and has taken all the safety courses would likely be a better or more experienced driver than the person who started driving today.

I guess that was a decent kinda dumb down the subject comparison.  ;D

Offline sharkdiver

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Re: Who Qualifies As a Longterm Survivor?
« Reply #103 on: August 14, 2008, 02:59:22 PM »
Oh yeah, I agree everyone should be respected. I doubt anyone would really argue with that.

But to analogize you could say that a person that has been driving a car daily for the last 20 years and has taken all the safety courses would likely be a better or more experienced driver than the person who started driving today.

I guess that was a decent kinda dumb down the subject comparison.  ;D

agreed

the analogy (not the dumb down part, silly)

Offline hudstar

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Re: Who Qualifies As a Longterm Survivor?
« Reply #104 on: August 16, 2008, 12:21:01 PM »
I think we had another similar posting on this site  - short term Vs long term if I remember. Being LTS is not a runner up for some academy award, it's just a term that encompasses a group of us with many feelings and memories that LTS share. For me long term survivor recognises those who were told they had a three year life expectancy, or thereabouts  ......so long term survivor is appropriate in terms of length of time living with HIV and for surviving it this far. LT experience is also different to that of someone diagnosed post HAART.  Today CD4 counts do not read as a countdown for life, there's more pills, more say in your health-care and no waking up every four hours to swallow toxic and experimental amounts of AZT. I do not remember what drug trails I went on as there were so many. Attitudes have also changed some - mostly due to political correctness i.e in the 80's & early 90's we were given our diagnosis printed with bold lettering stating HOMOSEXUAL HIGH RISK, a kind of certificate to remind you of what you are and what you had. I still have my certificate 20 years on.
 ;D

diagnosed 1988
POZ personals - hudster

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #105 on: August 16, 2008, 03:50:42 PM »
we were given our diagnosis printed with bold lettering stating HOMOSEXUAL HIGH RISK, a kind of certificate to remind you of what you are and what you had. I still have my certificate 20 years on.

Hi Hudstar, wow I cant beleive that they did that but knowing how some agencies in our goverment and the way some people still react to People that say they are Hiv+/Aids I know that it is a fact,,, at first when I found out that I was Hiv+ I was really scared to let anyone know because I did not want them to think that I was Gay, which I'm ashamed of thinking that way,,, as time went by I realized that I did not give a Shxt what anyone thought all that mattered was that I was alive but it took a long time,,, I got infected by using someone's needle, the one and only time that I did that....
In the last 6 yrs ever since I got clean I learned that all that matters is that I stay clean and take care of myself and hopefully I'll meet a Poz woman
PRMike

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #106 on: August 16, 2008, 04:19:53 PM »
I was going through some old paper work and found a diagnosis letter stating I had ARC.
AIDS related complex. I dont have one that says GRID though.

I wonder if any of you got a diagnosis letter that said GRID....

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #107 on: August 16, 2008, 05:30:37 PM »
I was going through some old paper work and found a diagnosis letter stating I had ARC.
AIDS related complex. I dont have one that says GRID though.

I wonder if any of you got a diagnosis letter that said GRID....
Hi Winiroo, I remember having been told that I was in the ARC stage but that was so long ago, now I do not know what is GRID,, never heard of it,, ????
anyway it's nice seeing you ok so long for now as always your friend PRMike
PRMike

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #108 on: August 16, 2008, 10:18:50 PM »
GRID = Gay related immune deficiency

Its what they called HIV/AIDS before they called it HIV/AIDS. I was diagnosed after they gave HIV its proper name.

Offline hudstar

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Re: Who Qualifies As a Longterm Survivor?
« Reply #109 on: August 17, 2008, 08:36:30 AM »
I wonder if any of you got a diagnosis letter that said GRID....

Wow,that would be a gem! Maybe we should open a HIV Museum
diagnosed 1988
POZ personals - hudster

Offline hudstar

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Re: Who Qualifies As a Longterm Survivor?
« Reply #110 on: August 17, 2008, 09:14:38 AM »
wow I cant believe that they did that but knowing how some agencies in our government and the way some people still react to People that say they are Hiv+/Aids

Hey PRMike. This was in Australia very early HIV days. In addition, HIV+ women were often branded "cheap" unless infected via blood transfusion - then they were promoted to innocent victim status. I hope women back then never had "CHEAP" emblazoned on their certificate  ??? !!!! Any HIV male regardless of who they were was automatically gay - no questions asked. Boy did the health experts go on a major learning curb since then. Shame it took then over decade to submit academic reports that people at street level knew all along! Another funny story from the days of hysteria here in OZ, Government talked about setting up quarantine style resorts, my favorite was a location off the far north Australian coast (a tropical island) Imagine.......sunshine, free accommodation and plenty of beach. I think the government realised we would have too much fun so took the biblical apocalyptic approach that served them well during election time!  ;D  Although not directly HIV related, at least one good thing came out of those dark days - they removed the "gay panic defence" from our legal system because gay murders rose drastically during those times.  Back then those of us who could afford to leave here applied for two year working visas - either to Canada or UK - me being one of them. I guess these are the things my generation of HIV'ers remember.

diagnosed 1988
POZ personals - hudster

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #111 on: August 17, 2008, 09:58:33 AM »
Hi Winiroo, thank you for the answer on GRID

Hudstar you have been through so much but I'm glad that your strong and still here to be my friend

I have much love and Respect for all of you,, I truely beleive that we are a very special kind of people, that have great passion, Love and Respect for others, May our Lord & Savior be with US

as always your Friend PRMike
PRMike

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #112 on: August 17, 2008, 12:40:40 PM »
Wow,that would be a gem! Maybe we should open a HIV Museum
The Smithsonian has research materials and interview tapes and transcripts.

I remembered reading somewhere there was a collection but I couldn't remember who it was. I looked online and found this on Google.

http://americanhistory.si.edu/news/pressrelease.cfm?key=29&newskey=728

Offline sparks

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Re: Who Qualifies As a Longterm Survivor?
« Reply #113 on: August 17, 2008, 01:01:15 PM »
I remember being 19 yrs old watching my room mate pass away from complications of aids. I was so scared i had never been tested for 2 yrs i went on worrying about it ,, it was a time of azt, chest ports , and lots of treatments that didnt work ...Right before my 21st birthday i got tested and the result was hiv + ,, i was really scared all the treatments didnt seem to not be working and one by one my freinds passed away at the time there was no need for treatment due to early detection , but  i new my time would come 5 to 6 yrs into it my numbers were starting to drop and at the same time the drug trials for all the new medications was going on at ARCA (aids research consortium of atlanta) and i got involved,, yes we didnt know what these medications were going to do to us but it was a chance i had to take ,,, there was so many pills in the beginning  i believe we were being over medicated due to the fact no one new the proper dosages . There was  so much diarhea and heartburn, but me and my fellow patients we labored on takeing our meds on time drawing the lab work doing the research,, it was well worth our efforts it didnt take long to see the positive results and it wasnt long til we moved from takeing 18 pills to 12 to now 4 a day ,,,to every one of the people involved id like to say god bless you job well done!!! it has made such a major impact on so many lives,,, i believe the day will come where we will see treatments come down to an injection once a year but until then watching the clock takeing my meds on time....
IM a 17 yr survivor my t-cells have always been 900 or above znd my viral load remains undetectable,, ive known i was positive since i was 20

Offline hudstar

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Re: Who Qualifies As a Longterm Survivor?
« Reply #114 on: August 17, 2008, 02:45:33 PM »
The Smithsonian has research materials and interview tapes and transcripts.


great to see that, thanks. I guess we all have stories to tell. I sometimes wonder how we had time to deal with ourself back then cause most energy went on trying to deal with what was happening externally
diagnosed 1988
POZ personals - hudster

Offline edfu

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Re: Who Qualifies As a Longterm Survivor?
« Reply #115 on: August 18, 2008, 05:01:00 AM »
NIH Researchers Recall the Early Years of AIDS:

http://history.nih.gov/NIHInOwnWords/docs/page_34.html

ACT UP Oral History Project:

http://www.actuporalhistory.org/interviews/index.html

Loads of history in these two sites. 
« Last Edit: August 18, 2008, 05:04:02 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline hudstar

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Re: Who Qualifies As a Longterm Survivor?
« Reply #116 on: August 18, 2008, 07:56:56 AM »
Returning to the subject of Long termers, You do not see much of the AIDS quilt anymore. It was once a central form of activism and remains a visual reminder of those who had died. Now the quilt comes out during World AIDS Day memorials and some un-named states have put the quilt to rest due to its upkeep being a financial burden.
diagnosed 1988
POZ personals - hudster

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #117 on: August 18, 2008, 11:56:09 AM »
Returning to the subject of Long termers, You do not see much of the AIDS quilt anymore. It was once a central form of activism and remains a visual reminder of those who had died. Now the quilt comes out during World AIDS Day memorials and some un-named states have put the quilt to rest due to its upkeep being a financial burden.

Very true, and quite sad to me.   The Names Project IS still accepting panels for the Quilt, I recently submitted one for my cousin who died in 1990.   I hope to begin work on a panel for my friend Kevin who died in January.    I know the Quilt is way too big to display, but it is an amazing Memorial.   Much of it is viewable online, too.  They even have some search functions available to help you locate names / panels.

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 BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #118 on: August 18, 2008, 11:58:51 AM »
Returning to the subject of Long termers, You do not see much of the AIDS quilt anymore. It was once a central form of activism and remains a visual reminder of those who had died. Now the quilt comes out during World AIDS Day memorials and some un-named states have put the quilt to rest due to its upkeep being a financial burden.

Yes, it is sad we don't see or hear about it anymore.  Back in like '92 or '93 there were some panels brought to the Steppan Center at the U of Notre Dame.  Myself and a group of my friends went to see it.  For the little bit of it that was there, it was breath-taking, all the different panels and designs.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline hudstar

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Re: Who Qualifies As a Longterm Survivor?
« Reply #119 on: August 18, 2008, 01:44:23 PM »

I recently submitted one for my cousin who died in 1990.  

Alan

Hey Alan, that was really nice what you did. The quilt here in Melbourne had a new panel added for AIDS Day service 2007 so i know they still add to it. Yes the quilt in America is massive.........very very sad. I remember seeing a picture of it spread out infront of what looked like the Whitehouse?
diagnosed 1988
POZ personals - hudster

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #120 on: August 18, 2008, 02:41:52 PM »
I helped in an unfolding ceremony of a panel they did here in the 90's. I never did make any panels for my husband or son though.

I used to have pictures but god knows where they went.

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #121 on: August 18, 2008, 03:01:44 PM »
I remember this:
"The overwhelming response to the Quilt's inaugural display led to a four-month, 20-city, national tour for the Quilt in the spring of 1988. The tour raised nearly $500,000 for hundreds of AIDS service organizations. More than 9,000 volunteers across the country helped the seven-person traveling crew move and display the Quilt. Local panels were added in each city, tripling the Quilt's size to more than 6,000 panels by the end of the tour.".....from aidsquilt.org

http://www.aidsquilt.org/history.htm

I was in New York City in 1988 to visit my friend Michael OBrian, who died of AIDS a few years later.  He and i went to view the quilt in Central Park. We entered the park and walked over a bit of a hill and then as the quilt came into view I had a sense of being overwhelmed and sad.  I started crying and Michael found the panel belonging to a friend of his. It was one of the saddest days of my life.  But its a moment I will cherish forever as I remember Michael as he was then.
Poz Bear Type in Philadelphia

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #122 on: August 18, 2008, 06:47:38 PM »
Hi I would like to know how can I look up a few names of some friends I knew that have passed ???
thank you for any help as always your Friend PRMike
PRMike

Offline J.R.E.

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Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #124 on: August 18, 2008, 08:27:53 PM »
I put in my late husbands name and came up with a match for someone with his name but with a different middle name. Funny
No one had my name or my son's.  :P

My late husbands name was Michael Hixon. He doesnt have a panel on the quilt.
I dont think I have showed him to any of you.
I dont think of him often anymore. He wasn't the best partner but he was a good friend.


Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #125 on: August 18, 2008, 08:49:45 PM »
You two were a handsome couple Wendy.  What year did he die?   He was a nice-looking man.

love & hugs,

Alan

PS - yes Joel, I have lots of SAD quilt memories too.....seeing the panels of friends we had lost, it could definitely be overwhelming.   My partner went when the Quilt was fully displayed on the National Mall in D.C. in Oct 1996, but I was still too ill to make the trip.   I have lots of photos of that event.   That was the same month my health began its drastic turnaround, from dying to living.
Odd to think back to that time....seems so long ago!
"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 Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #126 on: August 18, 2008, 10:45:58 PM »
He died January 19, 2001. He was 30 years old.

I think I was about 26 in the picture and he was 28.  The picture was taken before he started looking ill.
But guessing at how fat my face was he was having problems. I started gaining weight when he started getting sick.


Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #127 on: August 19, 2008, 08:57:58 AM »
I put in my late husbands name and came up with a match for someone with his name but with a different middle name. Funny
No one had my name or my son's.  :P

My late husbands name was Michael Hixon. He doesnt have a panel on the quilt.
I dont think I have showed him to any of you.
I dont think of him often anymore. He wasn't the best partner but he was a good friend.


Hi Winiroo, has anyone ever told you or him that he looked like Matt Damon  ???
PRMike

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #128 on: August 19, 2008, 09:52:14 AM »
Hi Everyone, I tried to look up some names but I could not do it,,, Do I have to go through all of it in order to find them ???
thank you again for any help as always your Friend PRMike
PRMike

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #129 on: August 19, 2008, 10:23:26 AM »
Mike,

Did you go to NamesProject.org?   then "View the Quilt",  then search:

by panel listing "contains" _____________ (type in the name here)

For example, if I do a search for panel listing that contains Greg Troia, it pops up several panels for him (he was a popular entertainer in Atlanta in the 80's)
"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 Winiroo

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Re: Who Qualifies As a Longterm Survivor?
« Reply #130 on: August 19, 2008, 12:34:58 PM »
Hi Winiroo, has anyone ever told you or him that he looked like Matt Damon  ???

No cant say I've heard that.
Michael was a hefty guy. Not real tall but a little taller than me at 5'10 I think at his heaviest he was 220 pounds. Which doesnt bother me at all but Matt Damon is way cuter LOL



Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #131 on: August 19, 2008, 08:22:10 PM »
Mike,

Did you go to NamesProject.org?   then "View the Quilt",  then search:

by panel listing "contains" _____________ (type in the name here)

For example, if I do a search for panel listing that contains Greg Troia, it pops up several panels for him (he was a popular entertainer in Atlanta in the 80's)
Hi AlanBama, thank you for the info, I will give it a try
PRMike

Offline hudstar

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Re: Who Qualifies As a Longterm Survivor?
« Reply #132 on: August 20, 2008, 12:09:31 AM »
Odd to think back to that time....seems so long ago!

I think what you said embodies the views of a long termer as it does seem surreal. Most of us here would also remember the obituaries in local gay newspapers and magazines - you dreaded reading through the names
« Last Edit: August 20, 2008, 12:15:10 AM by hudstar »
diagnosed 1988
POZ personals - hudster

Offline edfu

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Re: Who Qualifies As a Longterm Survivor?
« Reply #133 on: August 20, 2008, 01:03:42 AM »
Against the advice of my psychotherapist and doctor and (what's left of) all my friends, I refuse to throw out my old address/phone book that I began using in the early 1970s and begin a new one.  Some of the letters don't even have room for additions.  Next to each person who has died I've written in "R.I.P." in red and the date of death, if known.   It's spiral-bound and falling apart today, but I will NOT give it up and stop using it.  It has become my own personal memorial to all of them, and I do not know how I will otherwise remember them all.  I certainly will not forget my best friends who are gone, but this book includes acquaintances, fuck-buddies, and that endearing category of times past:  "tricks."  I recognize that this may seem morbid and creepy to many and not conducive to my own mental health, but I'm stubborn about it.   As an LTS who's now 65, I estimate that I've known over 150 who have died (not all of whom are in my book).  So in a way, it's my own personal Names Quilt.  R.I.P.       
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline AlanBama

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Re: Who Qualifies As a Longterm Survivor?
« Reply #134 on: August 20, 2008, 09:55:05 AM »
I think your address book is a great Memorial Ed....I have a similar one of my own.   It is ragged and held together with a rubber band....there are names of people that I KNOW died of AIDS; names of some that I don't know about (but wonder often) and some names of people that I cannot remember at all....now that makes you feel old.

I have tried several times to start a "list" of everyone I know that has died of AIDS, but I either get bogged down, or the task seems impossibly daunting, what with my memory being fuzzy anyway....I'm sure if I had such a list, it would overwhelm me.  :'(
"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 BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #135 on: August 20, 2008, 10:03:21 AM »
Edfu, I don't see anything wrong with that.  I think, like Alan said, it's a great memorial, in its own way.

I looked on the names project website last night, just out of curiosity about a friend who recently passed (2006) and yep, there was a beautiful panel for him.  It made me sad, but I'm glad he was remembered. :'(
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #136 on: August 20, 2008, 03:20:07 PM »
Hi I keep trying to look up these names but I can not seem to get it for some reason,,, if anyone can help me I will truely be grateful...
the names are Parker Hall  and John Kholler
I am not sure if he passed but his name is Julio Negron

thank you for any help as always your Friend PRMike
PRMike

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #137 on: August 20, 2008, 07:12:06 PM »
Mike, go to namesproject.org.  Then hit search and put in the person's name you're trying to find.  I don't know how to explain it any better.  Maybe someone else does.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline PRMike

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Re: Who Qualifies As a Longterm Survivor?
« Reply #138 on: August 20, 2008, 09:32:49 PM »
Mike, go to namesproject.org.  Then hit search and put in the person's name you're trying to find.  I don't know how to explain it any better.  Maybe someone else does.
Hi Betty, thank you and i will try it.. I hope that your alright and it is always so nice to hear from you as always your friend PRMike
PRMike

Offline sparks

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Re: Who Qualifies As a Longterm Survivor?
« Reply #139 on: August 22, 2008, 05:49:13 PM »
that quilt always disturbs me to see it
IM a 17 yr survivor my t-cells have always been 900 or above znd my viral load remains undetectable,, ive known i was positive since i was 20

Offline aztecan

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Re: Who Qualifies As a Longterm Survivor?
« Reply #140 on: August 22, 2008, 11:37:10 PM »
I saw the quilt when it was displayed on the Mall in Washington DC, in 1996. It was the last year the entire quilt was shown all in one place.

It was immense. I saw the names of many people I knew, including three panels I had submitted myself.

I was with a good friend named Cem McClellan. It was the first year I had stated meds and both he and I were on Crixivan, AZT and Epivir. Weird what you remember.

Cem died in 2000.

Those memories of Washington are really precious to me.

HUGS,

Mark

This is a panel from the quilt that includes a friend of mine, Pat Sanchez, who died just before the cocktails became available.


[attachment deleted by admin]
« Last Edit: August 22, 2008, 11:51:41 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #141 on: August 23, 2008, 12:24:41 PM »
This is a panel from the quilt that includes a friend of mine, Pat Sanchez, who died just before the cocktails became available.

Beautiful panel, Mark.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline KT2333

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Re: Who Qualifies As a Longterm Survivor?
« Reply #142 on: September 11, 2008, 10:38:39 AM »
I'm new here.

My cousin John was diagnosed with HIV in 1983, and died in 1996.  He was on AZT, and reading through all the comments here, I noticed quite a few of the LTS didn't take the meds until much later.  I wonder now if my cousin didn't take them would his chances for survival be longer then 13 years?  It was torture seeing him dying, but it made me an advocate. 

Thank you for this website.

Regards,
Katie

Offline Catman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #143 on: September 11, 2008, 07:23:15 PM »
Welcome Katie;

  I'm sorry for your loss but loosing loved ones makes us bypass our shyness and turns us into pretty good advocates for some things. Back then azt did good to some and bad to others. Doctors didn't know much about the virus either so I suppose they thought they were doing the best they could. I became detectable in 86 and was given AZT that same year. It made me miserable and I quit it on my own free will about 6 months later. I stopped taking any med but felt fine until 1993 when I got a terrible case of pneumonia. Then I visited a specialist in hiv and began my treatments. Thing is, I don't know why I've lasted this long and only last year became "undetectable" for the first time in these 22 years! I thought I was suppose to be "Six Feet Under" a long time ago. My strain of hiv is a mean one and resisted all the meds I went through until Fuzeon came out. I guess being an Air Force brat helped me grow a strong immune system with all those inoculations you get as a kid whenever your Dad is assigned to a new country or state. Who knows, but everyone here has a different reason for being a LTS but many did quit AZT on time....

Take care...
Catman

Meow to the birds
Meow to the tree's
Meow to the end
of this dreadful disease...

Offline bear60

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Re: Who Qualifies As a Longterm Survivor?
« Reply #144 on: September 12, 2008, 03:21:28 PM »
"I'm new here.
My cousin John was diagnosed with HIV in 1983, and died in 1996.  He was on AZT, and reading through all the comments here, I noticed quite a few of the LTS didn't take the meds until much later.  I wonder now if my cousin didn't take them would his chances for survival be longer then 13 years?  It was torture seeing him dying, but it made me an advocate.  " quote Katie

Katie my response to you would be this:
 In those early years:
1.  some people died very quickly, some did not
2. some took meds and some did not
3. azt was the only thing available to treat HIV infection...and it was good for some and not others.
4. some doctors prescribed very high doses, some did not....those who prescribed very high doses of azt made a mistake, as I remember it...the dosage was lowered to half the original recommended dosage
5. Had your cousin John not taken azt he might have died an even quicker death but ......he would have died anyway.
6. John lived for thirteen years with HIV? 1983 to 1996? My partner Paul only lived 6 years with HIV. 1989 to 1995. ( Had it not been for treatments he would have only lived a year or two after diagnosis)
7. remember him for who he was..... not for the HIV
Poz Bear Type in Philadelphia

Offline majykman

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Re: Who Qualifies As a Longterm Survivor?
« Reply #145 on: September 14, 2008, 05:47:32 PM »
By some peoples definition, I do not qualify as being an LTS. I was diagnosed in 1999, four years after the first PI was approved by the FDA. However, I think the standard definition will change as time goes by and new breakthroughs and disappointing setbacks occur. Coming up on my ninth anniversary, I would tend to say anyone that was diagnosed at least 10 years ago would be considered an LTS. But regardless of the definition, I find it inspiring and encouraging that there are still a lot of people that were diagnosed in the eighties and early nineties, still kicking it and chugging along. You guys and gals are the ones that the newcomers and not-so-newcomers look up to for advice on how to survive.  :)
Diag: 1999/12/23
VL: Been undectable since May 2000
Average CD4: 743

Offline bretticus

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Re: Who Qualifies As a Longterm Survivor?
« Reply #146 on: September 19, 2008, 07:56:01 PM »
I was infected in 1984 and am still here. A tough road. I have been very lucky. I decided that sitting around waiting.....was the wrong thing to do. I went back to school and received my B.S. I am now in graduate school for Politics and Public Policy. Perhaps I can get in there and kick some butt concerning health care, the environment, and the need to keep religion and politics separate. I think this website is indispensable. Who ever thunk it up done good! (English Major?)...lol
BretticusMaximus

Offline BT65

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Re: Who Qualifies As a Longterm Survivor?
« Reply #147 on: September 19, 2008, 08:04:12 PM »
Hey Bretticus,

Welcome.  Congrats on getting your BS and going on to get the graduate degree.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline heartforyou

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Re: Who Qualifies As a Longterm Survivor?
« Reply #148 on: October 01, 2008, 08:29:54 AM »
I can very well relate to "refusing to take AZT".

From 1989 I visited the HIV doc once a year, and at every occasion he would try to convince me in taking azt.
My homeopathic doctor always told me : no.

I followed her advice and only started taking meds in 1995, after PCP struck and almost killed me.

And yes, absolutely true is that I believed in survival.
I even started plans to build my own condo. The thought of it made many people uncomfortable.. as if I would go though all that trouble to never see it realised.
However, enough people stood by me and told me to go ahead.
I did finish my condo and moved in in 1998.

And last, but not least, i surrounded myself with positive thinking people, that treated me as a living being and not a "soon-to-be-dead " one.

These are some of  the reasons why I think  I am still around.

Love

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

 


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