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Author Topic: Survival  (Read 2270 times)

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Offline bear60

  • Member
  • Posts: 4,104
Survival
« on: August 26, 2013, 02:17:08 PM »
I think there are as many ways to survive HIV as there are people with HIV.  Its not right to generalize about HIV treatment in ways that are misleading or confusing to the newly diagnosed. 
A common question is: "How long will I live with HIV?"  Well, as long as you can!  But people want concrete numbers like 20 years or something.
Another common question is: "How long can I go without taking HIV drugs?"  Well, as long as your CD4 counts are normal and viral load is near or undectible. Could be 2 years 10 years or 20 years.  Like Ann said, if you are a long term non progressor, for a loooong time. 
I waited 24 years for the shoe to drop.  It finally did this year.  I am now taking a new HIV drug called STRIBILD.  Once a day pill.  But how lucky was I that I never had to take those awful drugs like DDI or AZT.  !!! Very lucky.
Hey, it is what it is.
Never become complacent about your health, check bloodwork regularly.
Poz Bear Type in Philadelphia

Offline Fisher

  • Member
  • Posts: 260
Re: Survival
« Reply #1 on: August 26, 2013, 08:54:04 PM »
You know bear, with people like you and me after so many years, research really should be done on "why the shoe drops" after such a long period of time. It might be of benefit and prevent others from being clobbered over the head!
- fisher
04/08 CD 486 %23 VL <20
11/13 CD 351 %21  VL <20
10/13 CD 390 %16  VL <20
06/13 CD 315 %19  VL  22
02/13 CD 396 %14  VL <20
12/12 CD 392 %13  VL 320
11/12 CD 428 %13  VL 1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 Western Blot
05/83 04/98 - Monogamous Partner Being Negative
ARS - Los Angeles Dec '82

Offline harleymc

  • Member
  • Posts: 169
Re: Survival
« Reply #2 on: August 27, 2013, 05:28:56 PM »
'Surviving' seems a really uninspiring goal but I'm having fun 'living with' HIV. Maybe one day I'll evict the defacto (that pesky virus hasn't been paying any rent or utilities).
I'm far more focussed on living well with HIV than living long with HIV.


Offline weasel

  • Member
  • Posts: 1,588
Re: Survival
« Reply #3 on: August 29, 2013, 11:08:17 PM »

   Hi Bear  :)

     I went almost 20 years  for the shoe to drop  ???

    I have know guys in my state of Missouri to die of AIDS in 5 years !
   This is here and now , Not back when the doctors were killing people
  with AZT !  I have no idea why some people can go a L O O O O N G  time
and other the virus eats them up .

    I was fortunate enough to work until I was over 50 , Being POZ from about 1981 was not a good thing , But I survived it until the good MEDS came !
   My friend Dale went 19 years , monitored every month . Two years on MEDS
and He is DEAD ! 
   The drugs ate him up  :'(

     I feel sorry for the guys that think we are OK because we have lasted over thirty years with HIV !
   Having AIDS is not fun thing for me .   I would give up everything to be " NORMAL " again !

                                 Just babbling ,
                                                          Weasel

   
" Live and let Live "

Offline bear60

  • Member
  • Posts: 4,104
Re: Survival
« Reply #4 on: August 30, 2013, 12:43:02 PM »
Harley...I still have my vices, girlfriend. lol
Poz Bear Type in Philadelphia

Offline bear60

  • Member
  • Posts: 4,104
Re: Survival
« Reply #5 on: August 30, 2013, 12:44:08 PM »
Fisher
I understand from my doctor that ALL HIV POSITIVE patients OVER 65 are now expected to be on an HIV med
Poz Bear Type in Philadelphia

Offline wolfter

  • Member
  • Posts: 4,036
Re: Survival
« Reply #6 on: August 30, 2013, 12:50:28 PM »
I was one of the unfortunate ones who went from being positive to having AIDS relatively quickly.  Dying or AZT was a tough decision.  I had several friends who chose death over that awful drug.  Some how I clung to the belief that something better would come along.

I should have bought stock in Haines back then. ;D
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline moxieinme

  • Member
  • Posts: 89
Re: Survival
« Reply #7 on: August 31, 2013, 01:41:31 AM »
I was one of the unfortunate ones who went from being positive to having AIDS relatively quickly.  Dying or AZT was a tough decision.  I had several friends who chose death over that awful drug.  Some how I clung to the belief that something better would come along.

I should have bought stock in Haines back then. ;D
Dying or AZT...that was pretty much the outlook given to me in 1989. I was extremely fortunate to learn my HIV status through a routine test for life insurance (hah!) so was able to take action while I was healthy rather than be blindsided by illness. My CD4s were 330 which was a serious concern; we didn't have VL or other detailed labs at the time. I was in the SF Bay Area so had access to some of the most knowledgable folks in the biz. AZT came along later that year so I of course grabbed at whatever I could when advised.

Now having been through the wringer(s) of being treatment experienced, failing regimen after regimen because of drug resistance, do I wish I hadn't started early? Maybe. Who knows? Am I thankful that what drugs I did leapfrog to over time kept me here and healthy? Yeah, I'm pretty sure they deserve some credit.

And yeah I know all about the harshness of the earlier drugs. I remember driving to work and puking my guts out after my morning AZT (over)dose. Anyone remember Darunavir? If not, you're lucky; that was a big misfire. And the lipodystrophy side effects from other meds could be as debilitating, physically and mentally, as HIV itself.

So I want to give credit for anyone who can stay clinically healthy and be off meds. More power to you for being able to avoid pouring chemicals into your body. But let's not do the 20:20 hindsight thing about past meds. It got us here -- well, not all of us but many of us -- where we are today: alive for second and third chances at life. If we really want to save people from taking meds, let's get word out to get tested early and monitor often.

Oops, time's up on my soapbox.
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline harleymc

  • Member
  • Posts: 169
Re: Survival
« Reply #8 on: September 01, 2013, 08:42:55 AM »
I know there's a pretty large crowd that reckon's AZT was an invention of the devil, but it sure as hell  gave my immune system a good boost for 6 months, then there was the DDI boost, the 3tc, the ddc..... it all added up to me surviving  just long enough for those protease inhibitors. The rest is history.

There is some back story to AZT being relatively successful in Australia, the  initial trials of the high dose AZT got taken over by our local Treatments Action Groups. All AZT and the placebo capsules were thrown into a bucket. So on average all trial participants were getting half dose AZT rather than high dose vs contol wings.



@bear
I'm glad one of us still has vices.

Offline aztecan

  • Member
  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: Survival
« Reply #9 on: September 01, 2013, 09:22:31 PM »
I took AZT for 13 years, but never as monotherapy or no huge doses.

I remember it quite well. The little white capsule with a blue band. I took six a day for more than a decade before switching to combivir.

I remember I could time the queasy stomach that happened after every dose, too.

It took precisely 45 minute for it to hit. I took it on an empty stomach because I was taking Crixivan for most of those 13 years.

Ah, the memories. As Wolfie said, I wish I had taken out stock in Fruit of the Loom, and other linens as well.  ::)

HUGS,

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

Offline wolfter

  • Member
  • Posts: 4,036
Re: Survival
« Reply #10 on: September 01, 2013, 09:41:17 PM »
Combivir wasn't much better.  If I remember correctly, I took that one with Kaletra?  Christ, I've had so many combos that I only recall them once someone else mentions them.

Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline GSOgymrat

  • Member
  • Posts: 4,959
  • HIV+ since 1993. INTJ
Re: Survival
« Reply #11 on: September 02, 2013, 11:01:32 AM »
There are many people who can't handle daily stress, much less living with HIV. The people who are still here are not just lucky, they are strong.

Offline wolfter

  • Member
  • Posts: 4,036
Re: Survival
« Reply #12 on: September 02, 2013, 11:20:56 AM »
Dying or AZT...that was pretty much the outlook given to me in 1989.

89 was the year of my AIDS.  Really sucked to only have those 2 choices, neither of which was good.  Positive at 21, and AIDS at 24 seems surreal now.  Not sure if there's something wrong with me or if it's common as I think about a few of my closest friends on a regular basis. 

Obviously, Bill had my heart, but the other Gregg had another special part.  Best friends since 5 years old and watching him die a horrid death has somewhat jaded me.  I try not to think of him too often, but I do several times per day.  He was the antithesis of me which I think forged the greatest lifelong bond.

At least I know he'd appreciate my dark humor when I say that at least he got to die with a full head of hair and not face middle age.  He and many others will forever remain young in my memory.
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,620
  • Diagnosed + 1989
Re: Survival
« Reply #13 on: September 02, 2013, 04:30:17 PM »
AZT....6 pills every 4 hours around the clock.  Lead to anemia.  Besides other problems we were all familiar with.

I remember my friends the way they were also.  I'll never forget the first friend I had that passed from complications.  He sold his life insurance policy and bought a Winnebago, and traveled.  He also spent lavishly on his friends.  Such a beautiful soul.  I'll never forget any of my friends who passed, but the first one kind of holds a special place.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,180
  • 30 Years Poz
Re: Survival
« Reply #14 on: September 04, 2013, 02:47:25 PM »
I know there's a pretty large crowd that reckon's AZT was an invention of the devil, but it sure as hell  gave my immune system a good boost for 6 months, then there was the DDI boost, the 3tc, the ddc..... it all added up to me surviving  just long enough for those protease inhibitors. The rest is history.

There is some back story to AZT being relatively successful in Australia, the  initial trials of the high dose AZT got taken over by our local Treatments Action Groups. All AZT and the placebo capsules were thrown into a bucket. So on average all trial participants were getting half dose AZT rather than high dose vs contol wings.

@bear
I'm glad one of us still has vices.

I'm not sure if AZT was made by the devil, but I know for sure that liquid Norvir was the spawn of Satan.  It tasted like gasoline/kerosene/heavy crude oil and the only thing that got that awful taste out of my mouth were Rolo's.

Joe
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Offline moxieinme

  • Member
  • Posts: 89
Re: Survival
« Reply #15 on: September 04, 2013, 04:02:11 PM »
I'm not sure if AZT was made by the devil, but I know for sure that liquid Norvir was the spawn of Satan.  It tasted like gasoline/kerosene/heavy crude oil and the only thing that got that awful taste out of my mouth were Rolo's.

Joe
Oh man, that's the truth. BLECH! I took the liquid with me on a trip after being advised that the capsules needed refrigeration but the liquid didn't. Way to kill a vacation. Except yeah, the bright spot was chocolate was the antidote!

And about long-term survivors being lucky and strong? Truth!
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline harleymc

  • Member
  • Posts: 169
Re: Survival
« Reply #16 on: September 05, 2013, 07:54:04 AM »
My nightmare combo was mid nineties with saquinavir, ritonavir & d4t. Massive doses of the trots for about 5 hours per day and complete loss of sensation in my legs & feet which made the stairs to my apartment a lottery as to falls.

The photos of me from that era are scarey... looking like a survivor from Belsen or Dachau.

And these days I just trot along to my physio, do my gym work and swimming and cycling.  Oddly enough I have roughly the same no of cd4 cells as i did back then (70 now vs 60 in the latter half of the 1990s) but the health differences are gigantic. Being off the drugs, off the cigarettes and with alcohol only very occasionally helps with the health too. Fitter than ever I was in my youth.
« Last Edit: September 05, 2013, 07:58:33 AM by harleymc »

Offline moxieinme

  • Member
  • Posts: 89
Re: Survival
« Reply #17 on: September 05, 2013, 11:25:18 AM »
And these days I just trot along to my physio, do my gym work and swimming and cycling.  Oddly enough I have roughly the same no of cd4 cells as i did back then (70 now vs 60 in the latter half of the 1990s) but the health differences are gigantic. Being off the drugs, off the cigarettes and with alcohol only very occasionally helps with the health too. Fitter than ever I was in my youth.
Harleymc, I love this. Hooray for you!

Ah those nightmare combos. What stories we can tell.

JD
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline aztecan

  • Member
  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: Survival
« Reply #18 on: September 09, 2013, 08:15:08 PM »
My nightmare combo was mid nineties with saquinavir, ritonavir & d4t. Massive doses of the trots for about 5 hours per day and complete loss of sensation in my legs & feet which made the stairs to my apartment a lottery as to falls.

The photos of me from that era are scarey... looking like a survivor from Belsen or Dachau. . . .

Holy Cow!, I forgot about Saquinavir. I was only on it for two months, but it made Criix a breeze!.
If memory serves, my doctor had me taking it with an 8 ounce glass of grapefruit juice and a full-fat meal. Boy, was I sick from that stuff.

Glad you are now doing so much better!

HUGS,

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

 


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