Who Qualifies As a Longterm Survivor?

[BT65]

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.

[SteveA]

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.

[Winiroo]

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. 

[sharkdiver]

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. 

agreed

the analogy (not the dumb down part, silly)

[hudstar]

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.
 

[PRMike]

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

[Winiroo]

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....

[PRMike]

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

[Winiroo]

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.

[hudstar]

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

[hudstar]

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!    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.

[PRMike]

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

[Winiroo]

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

[sparks]

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....

[hudstar]

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

[edfu]

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. 

[hudstar]

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.

[AlanBama]

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

[BT65]

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.

[hudstar]

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?

[Winiroo]

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.

[bear60]

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.

[PRMike]

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

[J.R.E.]

http://64.32.160.70:591/FMRes/FMPro?-db=search%20the%20quilt.fp5&-sortfield=block%20number&-format=ZTableVw.htm&-lay=Table%20View&-max=25&-find

[Winiroo]

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. 

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.

[AlanBama]

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!

[Winiroo]

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.

[PRMike]

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. 

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]

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

[AlanBama]

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)

[Winiroo]

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

[PRMike]

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

[hudstar]

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

[edfu]

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.       

[AlanBama]

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. 

[BT65]

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.

[PRMike]

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

[BT65]

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.

[PRMike]

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

[sparks]

that quilt always disturbs me to see it

[aztecan]

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]

[BT65]

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.

[KT2333]

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

[Catman]

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...

[bear60]

"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

[majykman]

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. 

[bretticus]

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

[BT65]

Hey Bretticus,

Welcome.  Congrats on getting your BS and going on to get the graduate degree.

[heartforyou]

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