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Author Topic: Analysis: HIV life expectancy now `normal`  (Read 24427 times)

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Offline trellium

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Analysis: HIV life expectancy now `normal`
« on: August 27, 2006, 09:36:31 AM »
Analysis: HIV life expectancy now `normal`

http://news.monstersandcritics.com/health/article_1194677.php/Analysis_HIV_life_expectancy_now_`normal`



TORONTO, ON, Canada (UPI) -- A decade ago, when a doctor diagnosed a patient with an infection caused by human immunodeficiency virus (HIV) -- the microbe responsible for AIDS -- that individual faced a bleak and short future.

The disease was usually advanced, the treatments were limited and a patient`s life expectancy was in the neighborhood of about two years.

'Today, I can tell my patients with HIV that they can have a normal life expectancy,' said Stefano Vella, director of drug research and evaluation at the Institute Superiore di Sanita in Rome, the equivalent of the U.S. National Institutes of Health.

Of course, there are some caveats, Vella told United Press International, the chief one being that the patient has to take the prescribed medicines faithfully; another, that patients have access to treatment.

'We have so many medicines now and they are so good that we know we can keep the virus suppressed for years,' said Vella, a former president of the International AIDS Society, the organization that ran last week`s record-setting International AIDS Conference in Toronto, Canada.

For patients in the United States and in the rest of the world where access to the antiretroviral drugs is available, Vella said that physicians can construct potent lines of long-lasting, well-tolerated treatment.

For example, in 1998, Abbott Laboratories enrolled 100 patients in its initial major study involving the protease inhibitor lopinavir, boosted with a small dose of another protease inhibitor ritonavir. Together, the drug is prescribed as Kaletra.

Of that original group of 100 patients, 61 remain on Kaletra and 59 percent of them have HIV viral loads that cannot be detected in the blood with standard assays eight years after starting on the drug.

When the virus is suppressed to undetectable levels, researchers say, the ability of the microbe to mutate and escape the drug is limited. As long as patients stay on combination therapy that has been the mainstay of treatment since 1996, the virus is thwarted from destroying immune cells and cannot create an immunosuppressed environment from which obscure and deadly AIDS infections can arise.

'We can now have drugs that allow us to construct second, third and even fourth lines of treatment that are all capable of suppressing the virus,' Vella said. 'What`s more, we are going to see even better drugs in just a couple of years.'

'Our new treatment guidelines,' said Scott Hammer, professor of medicine at Columbia University in New York, 'encourage doctors to treat even the most-experienced patients with an eye to suppressing the disease.'

Hammer told UPI that these patients -- subjects who have been treated with drugs since the earliest days of the AIDS epidemic -- often have virus species that have developed mutations that make many of the treatment options unusable.

However, two of the newer protease inhibitors, tripanivir and darunavir, were specifically designed to overcome the virus that have developed resistance to other antiretrovirals, he said.

Vella pointed to the impressive debut of investigational integrase inhibitors, a new class of drugs that attack an enzyme required by the virus to replicate. The integrase inhibitor MK-0518 worked as effectively as the best treatment available for individuals who have not previously received antiretroviral therapy. What`s more, MK-0518 worked significantly faster in lowering virus in the blood.

The ability to hold the virus at bay for years now has doctors looking far forward in treating patients because 70 percent of patients infected with HIV will die of something other than AIDS, said Eric Daar, chief of HIV medicine at Harbor-UCLA Medical Center in Los Angeles.

Instead of just focusing on HIV levels, he said during a symposium at the conference, doctors have to tailor the medicine to the patient since 9 percent of HIV patients are now dying from heart disease. Another 15 percent die from liver disease and 8 percent die from cancer.

But with the number of drugs available, 25 are being marketed currently, Daar said clinicians can find potent combinations that suppress the virus and do not raise cholesterol or liver enzymes.

'We know the benefits of antiretrovirals far outweigh the risk of heart disease,' Daar said. And he said that before getting too worried about what regimen to use to protect specific organs, doctors would be wise to have HIV patients get other risk factors under control -- including cessation of smoking.

'HIV is a chronic disease,' Vella said. 'If patients stay on their medicines, they will live a normal lifetime.'

Adherence or compliance with the regimens - one of which has now been simplified to one pill once a day - has been a problem in the past because of numbers of pills required and because all drugs have adverse side effects.

Doctors and patients have been seeking drug treatments that lessen the number of drugs involved in these regimens in experimental programs.

'These regimens may look good,' said Mark Wainberg, director of the McGill University AIDS Research Center, 'but they are not ready for prime time.'

 :)

Offline Alain

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Re: Analysis: HIV life expectancy now `normal`
« Reply #1 on: August 27, 2006, 10:13:13 AM »
.
« Last Edit: November 03, 2006, 06:14:25 PM by cowandalehouse »

Offline IzPoz

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Re: Analysis: HIV life expectancy now `normal`
« Reply #2 on: August 27, 2006, 10:26:38 AM »
I want to make Love and be Loved without being worried back.

I agree with you here.

As for "normal"... While we are facing a tough battle with HIV, we could go out this afternoon and (God forbid!) get hit by a bus, or some freak accident like some mechanical object falling off an airplane and into your house... (it's happened down here!!)...

Take things day by day.  All else is gravy.
The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.

Offline jkinatl2

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Re: Analysis: HIV life expectancy now `normal`
« Reply #3 on: August 27, 2006, 10:28:10 AM »
Yay, AIDS is over. We can all pack up shop and go home.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline newt

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Re: Analysis: HIV life expectancy now `normal`
« Reply #4 on: August 27, 2006, 10:28:56 AM »
Normal life expectancy and normal life are two different things. 

However, right now, right here, I feel normal.  Things may change, but right now....this seems unfair somehow, but it's dishonest not to say, this is my right here, right now experience.  And I know it's not others' experience, including many of my friends, and that it may change. But right now, right here...

- matt

Now playing: Neil Diamond, I Dreamed a Dream
"The object is to be a well patient, not a good patient"

Offline Life

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Re: Analysis: HIV life expectancy now `normal`
« Reply #5 on: August 27, 2006, 10:29:46 AM »
Izzy, normal to me is when the plane flies over my house, they don't hit the "Dump Toilet" button in the cockpit...  Thats normal for me..   ;)

Offline ImagineFL

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Re: Analysis: HIV life expectancy now `normal`
« Reply #6 on: August 27, 2006, 12:35:08 PM »
Normal is as normal does...

Everyone has a different definition of normal.  My life is not the same as it used to be, I'll admit that.  But it is better then it could be without all these drugs.

Patrick

Offline terpie82

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Re: Analysis: HIV life expectancy now `normal`
« Reply #7 on: August 27, 2006, 01:25:22 PM »
The researcher made a clear point that it was normal life expectancy and not normal life, which would have been a dilemma averted if we are to take his words seriously. And a "normal" or average life expectancy for males/females from birth (2006 estimates) is 75.02/80.82 years and the adult HIV/AIDS prevalence rate (2003 estimates) is 0.6% (https://www.cia.gov/cia/publications/factbook/geos/us.html). I'm curious to know how many of the 0.6% can benefit from this provided they remain undetectable throughout their entire left. Lord forbid, I may one day not be undetectable anymore and so my life expectancy would decrease. I sometimes cringe at such public statements. My physicians at NIH tells me I will have a normal life expectancy in the confines of the clinic room which I think is appropriate, but to state it publically? I can see it now, someone who is HIV- will read this guy's words and think HIV/AIDS is probably not a big deal anymore and will go out and have unprotected sex because he/she can have a normal life expectancy on the off chance he/she contracts the virus. And isn't it ironic that this guy is the director of "drug research and evaluation"? Can we say money, money, money, moneeey...moneeeeey! Or maybe I'm just reading too much into this  :)
Diagnosed in 2003
UD since 2004 and >35% (with one blip)

Offline Miss Philicia

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Re: Analysis: HIV life expectancy now `normal`
« Reply #8 on: August 27, 2006, 02:10:34 PM »
Normal life expectancy and normal life are two different things. 
Exactly what I was going to say.

However, as I was diagnosed with sub 200 CD4's in '93 I just assumed I'd be lucky if I saw the new millennium come.  If I had known I'd still be alive in the present year I'd not have done so many stupid things in the interim.
"Iíve slept with enough men to know that Iím not gay"

Offline LatinAlexander

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Re: Analysis: HIV life expectancy now `normal`
« Reply #9 on: August 27, 2006, 07:17:40 PM »
This is a VERY dangerous statement...This simply hides the fact that people may STILL DIE FROM AIDS...and that automatically can be translated in no more research, no more new medicines...

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline Cliff

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Re: Analysis: HIV life expectancy now `normal`
« Reply #10 on: August 27, 2006, 07:41:22 PM »
What strikes me as odd, is that one can say that the life expectancy is near normal, but then the following is also reported...
Quote
Instead of just focusing on HIV levels, he said during a symposium at the conference, doctors have to tailor the medicine to the patient since 9 percent of HIV patients are now dying from heart disease. Another 15 percent die from liver disease and 8 percent die from cancer.
That doesn't sound like normal distribution of those diseases and I would willing to bet that if you look at the age of those dying from those conditions, (for positive individuals), it's much younger than the general population.

I do get the point of the message, that things are improving for people living with HIV.  And that's certainly true.  But I haven't seen enough reports from statisticians that the life expectancy of those with HIV matches that of the general population.  But if it does, can someone please inform the disability and life insurance companies of this fact.

Offline Jacques

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Re: Analysis: HIV life expectancy now `normal`
« Reply #11 on: August 27, 2006, 11:03:22 PM »




(note:that picture was found on the Net.)

This guy as now a normal life expectancy. Do I have to explain what kind of life quality he is now having?

I wish that those statisticians got the virus, so they would realize how long a normal life could be for those already infected.

I don't applause to that news.

Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline Sky

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Re: Analysis: HIV life expectancy now `normal`
« Reply #12 on: August 28, 2006, 12:02:58 AM »
Though it is very true that a normal life vs a normal life expectancy are quite different, baby steps in the right direction are still something good.  There are a lot of people that have commited their lives to making ours easier.  They've given us and doctor's a basic set of tools to prolong our lives, now they just need to fine tune them to make us have a better life...a more "normal" life.
Poz since 2003.

Offline Life

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Re: Analysis: HIV life expectancy now `normal`
« Reply #13 on: August 28, 2006, 12:05:16 AM »
Jacques, the picture says a thousand words.  I think the people that use the word "NORMAL" are normal.  If the bean counters were positive, it would be another story...  In my short experience, we as a community cannot even comprehend the word, nor should we allow it to be associated with HIV/AIDS.  Is it normal to see a Infectious disease doctor every 2 or 3 months?  Is it normal to spend 2000 dollars a month to stay alive?  Is it normal to have liver, kidney, heart problems within 10 or so years?  That's not normal for me...  Quality Normalcy or "QN" not to be confused with "PN"... I want that!

I would also on the other side - say this - The Gentlemen depicted in the photo has been thru a great deal.  Ever so much more than the newly infected.  For the newly infected, living with hiv,  their chances, their choices are indeed better.  But that's the way science is.............

That's all...
« Last Edit: August 28, 2006, 01:16:18 PM by Eric »

Offline Cliff

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Re: Analysis: HIV life expectancy now `normal`
« Reply #14 on: August 28, 2006, 12:13:55 AM »
The message here is that quality of life is just as important as longevity.  And while improvements have been made to longevity, perhaps it would behoove the medical community to also focus on improving the quality of life as well.  That message shouldn't take away from the great strides made in terms of longevity, but perhaps also adds a complexity to the situation, that some people may take lightly.

I remember reading, when I first became positive, this pamphlet on the possible side effects of taking HIV meds.  It got to facial wasting and said a bunch of stuff about the condition, but the only thing I remember from that pamphlet, was that it said 'some people actual like having a more angular face.'  I always thought that was an odd thing to write to folks who are facing potentially body-altering drugs.  It certainly didn't make me feel more comfortable about facing the prospect of facial wasting.

Yes, we should applaud the improvements to longevity.  But we should also make sure people understand that we are also concerned with quality of life as well.

Offline MC

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Re: Analysis: HIV life expectancy now `normal`
« Reply #15 on: August 28, 2006, 03:15:21 AM »
MMMMMM
I tested poz on july 31st.
I cant imagine id ever feel normal again?
HIV HIV HIV..........in my head.........HIV HIV HIV!!
I didnt ever know that before July 31st.Thats just simply not normal........
MC
08/06 cd4s 320 vl 900,000

Offline newone

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Re: Analysis: HIV life expectancy now `normal`
« Reply #16 on: August 28, 2006, 06:05:30 AM »
Over 40, gay, single and hiv+..I am really depressed!!
« Last Edit: August 28, 2006, 06:16:59 AM by newone »
Sustiva, Truvada
cd 212 Mar 04
cd 265 May 04 (started meds)
cd 389 Jun  04
cd 504 Oct  04
cd 449 Dec 04
cd 518 Apr 05
cd 449 Nov 05
cd 514 Jan 06
cd 618 Apr 06
cd 665 Jul 06
cd 617 Nov 06
cd 604 Apr 07
cd 956 Aug 07
cd 690 Nov 07 (26%)
cd 771 Apr 08 24%
cd 737 Sep 08 27% Atripla
cd 648 Jan  09 27%
cd 627 Apr 09 25%
cd 607 Oct 09 25%
cd 676 Jan 10 25%
cd 811 Jun 10 25%
cd 922 Nov 10 27%
cd 860 Apr 11 28%
cd 767 Jul 11 24%
cd 843 Oct 11 27%
cd 1350 Jan 12 27%
cd 756   Jun 12 27%
cd 1151 Oct 12 35%
cd 965  Jan 13 36%
cd 875 May 13 32% Eviplera
cd 845 Jul 13  30% und.

Offline manchesteruk

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Re: Analysis: HIV life expectancy now `normal`
« Reply #17 on: August 28, 2006, 06:27:25 AM »
Like Matt said the important thing to remember about this article is that at no point did it say people with HIV now lead normal lives no one could argue that was the case.  It says they have the chance of a normal lifespan that's totally different.  Just look at the situation 10 years ago compared to today the drugs are substantially better and who's to say they won't be much better in another 10 years.
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline Jeffreyj

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Re: Analysis: HIV life expectancy now `normal`
« Reply #18 on: August 28, 2006, 07:04:59 AM »
This is sending a totally false message. Oh great, I wonder how many people saw this and say "see, i just take pills and live a normal life! Who cares if I get HIV. YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO.
I think this idiot should SHUT HIS IDIOTIC MOUTH. It's crap like this that KILLS people. Normal MY ASS
Positive since 1985

Offline bobik

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Re: Analysis: HIV life expectancy now `normal`
« Reply #19 on: August 28, 2006, 10:13:22 AM »
I agree with all of you and yet: I am glad that the statistics tell me that I might get 80 years old or even older. I love life.

Coen
Coen Honig at Facebook

Offline Moffie65

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Re: Analysis: HIV life expectancy now `normal`
« Reply #20 on: August 28, 2006, 10:19:37 AM »
'Today, I can tell my patients with HIV that they can have a normal life expectancy,' said Stefano Vella, director of drug research and evaluation at the Institute Superiore di Sanita in Rome, the equivalent of the U.S. National Institutes of Health.


Sorry ladies, this might be considered a "blue post"...

I have a nice hard dick this man/person can sit on.  A viral protein he should sample for himself.  A life of struggle he needs to consider.  All in all, this is such a load of crap, it makes me want to puke!  Unfortunatley, this could have been stated, (and has been) by our own resident idiot; Antony Faucci, director of HIV research at our own NIH.  I have personally chewed out this asshole more than once in my life, and I encourage you all to do the same.  He hates being called out by people actually "Living with this virus".

I must tell all of you people, Arizona is growing fatigued at my insistance that HIV is not a "Chronic Condition" and each and everytime I remind them of it, they need to ask the one spewing this shit if they are living with HIV, and if they have first hand knowledge of anyone doing so.  The answer is always delivered with a blush of guilt, for listening to assholes around the globe that have an agenda permiated with Massive FUCKING Profits from BIG PHARMA!!!!! Please guys, don't make me get on my soap box with you all, you need to get active and quit your complaining about idiots with money, spewing crap for the edification of their own egos, and research purses.  Access is granted for speaking your mind very easily, as few will argue with someone living with HIV.  

I am now pissed, and I have to get in my car and drive 60 miles to go get a blood draw, to once again show that non-detectible is pretty much a dream for many of us.  And Coen, please tell me how many Long Term Survivors you actually know have been studied that have lived to 80 years old.  Please don't let data that is unsubstantiated be something you trust for your life plan.  Live today and fuck tomorrow!

It is now time for me to go puke!!!

In total AWE!
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline jack

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Re: Analysis: HIV life expectancy now `normal`
« Reply #21 on: August 28, 2006, 10:31:37 AM »
I understand why everyone is pissed at this article, but I think its important that people know that they are likely to have a normal life span. Sure a lot better than the first time I went in and the Dr. told me I would be history in two years. BUT is also important to emphasize all the bad crap that happens to you in the normal life span if you have HIV. My experience with even the most empathetic hiv drs. is they don't wanna hear about the sides or other problems, their concern is that you are still alive and most of the crap is just your imagination.

Offline David_CA

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Re: Analysis: HIV life expectancy now `normal`
« Reply #22 on: August 28, 2006, 11:50:44 AM »
Like Jack, I can understand why so many are pissed about statements like in this article.  Actually, I'm glad to hear this sort of data.  Without it, what hope is there?  I wonder how many who've this virus has already killed would like to be alive and have the opportunity to even hear this news?  I'm sure I'll find out soon enough how badly the drugs will effect me.  I know that I'll not feel 'normal' a lot of the time.  I'm also glad to hear that I most likely won't die in a couple of years.  Without this hope, why eat properly, like so many advocate?  Why drink lots of water and exercise?  Why not give up completely?  Maybe at some point I will give up.  But now, for a newly diagnosed person, I NEED to hear that there is hope.  I NEED to know that maybe I'll be around to see a cure.

I don't think this is sending the wrong message.  Agreed, it may be an incomplete message.  I certainly never thought that HIV would enter my life, but I wasn't negligent in my actions because I thought HIV was a 'manageable' condition.  I just wasn't as aware of transmission as I should have been. 

That pic of the guy posted... I wonder how long he's been on meds?  I bet it's a long time.  Hopefully, the newer drugs won't be as harsh on us.  Time will tell.  In the meantime, I'll try to exercise and eat well, take meds (when prescribed) faithfully, keep my appointments, and keep hoping to live to see the day when my husband and I will be cured.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
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02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
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02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
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Offline jack

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Re: Analysis: HIV life expectancy now `normal`
« Reply #23 on: August 28, 2006, 01:11:22 PM »
Do meds cause the sunken face appearance? I don't know. I have it a little but its my swollen parotid glands that make me look like someone I don't know and my friends don't know. I do remember seeing the sunken cheek look in early to mid 90s, so they couldn't have been on meds too long.
Everyone seems to be effected differently by different meds. You can hide the lipo fat deposits below the neck and the skinny limbs but you cant hide your face and the sunken face thing is like wearing a neon sign that you have aids. I feel very fortunate that I have not had it as bad as some.

If someone had assured me that I would live a normal life span, I know I would have made many different career,personal, and financial choices over the past 17 years.

Offline bobik

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Re: Analysis: HIV life expectancy now `normal`
« Reply #24 on: August 28, 2006, 01:29:52 PM »
Hey Tim, Moffie,

I choose to be optimistic. That is my way of surviving. It is the same theme as the expectations threat: I can't live with the idea that I might die soon, so I choose to ignore it, and hope to get 80, and live my life as if I am going to.

I am afraid, when my liver enzymes go up, when I get gout, when my cholesterol is too high, and I know damn well that things might be different. I agree with everything that is being said here. But I need the optimism, without that I would have been dead before HAART was even there.


Coen
Coen Honig at Facebook

Offline blondbeauty

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Re: Analysis: HIV life expectancy now `normal`
« Reply #25 on: August 28, 2006, 06:44:43 PM »
Compared to what we had in 1986, the future is much better. So I think there is a reason to be optimistic and thankful for all the research that has been made (for money, philanthropy or whatever other reason).
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
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Offline Moffie65

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Re: Analysis: HIV life expectancy now `normal`
« Reply #26 on: August 28, 2006, 07:39:06 PM »
This is for Coen,

I want to apologise for calling you out.  You guys in Europe have a damn sight better chance of living a full life than those of us here in the United States. 

Our present government is doing it's damnedest to make sure none of us have the support we need in the future.  They are trying to make HIV no more caustic than Arthritis.  I have a paper here, published by the HHS, which is our top department in doleing out care, meds, and a certain future.  There is every effort to diminish this disease to a mere headache, and with the overhaul of Medicare, they are plotting to make it most difficult to in fact, "LIVE" with HIV.  Please don't take my commentary personal, as I understand the need to be optimistic.  Optimism is one thing I have stressed here more than once, and it has truly helped me to survive this long.  What I don't want U.S. Citizens to ever take for granted, is the continuation of the level of services that they now appreciate.

YOu know WAR is HELL, and it is damn expensive.  Those of us who are a drag on the budget need to be very astute in our guardianship of the health care we have.  Something I wish not to take for granted.

In Love
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline RobT

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  • Posts: 319
Re: Analysis: HIV life expectancy now `normal`
« Reply #27 on: August 28, 2006, 09:58:07 PM »
Thanx for posting this. I remain optimistic that if ppl who r living w/ HIV continue to take care of themselves and seek treatment, then a 'normal' life expectancy cud b obtained. I know that w/ all the medical advances that these things cud happen. I just don't want the naive to read stuff like this and think all they have to do is take pills and HIV will go away. I hope that this post does not also equate to less medical advances and breakthroughs in the coming yrs.
What really classifies as 'normal'? I do not think having to get blood draws every month is considered normal, nor do I believe that putting up w/ all the side-effects of these powerful drugs is normal either.  Nor do I think spending $2000 and up on meds is normal either. There is nothing normal about any of this.
I just hope that there will b continued medical advances to put an end to this wretched bug.

RobT

9/27/2005-1st test results
Viral Load >1,000,000
CD4 204
CD4%age 18
CD4/CD8 ratio .23
11/24/2005- Sustiva/Truvada
04/18/2006
Viral Load 140
CD4 402
CD4%age .21
CD4/CD8 ratio .39
06/27/2006
Viral Load 42
CD4 409
CD4%age .21
08/01/2006
Viral load- undetectable
CD4 493
CD4%age .33

Next lab: 09/01/2006


Current meds: Atripla
VL: undetectable
CD4: 630

Offline MC

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  • Hello.........
Re: Analysis: HIV life expectancy now `normal`
« Reply #28 on: August 29, 2006, 05:29:09 AM »
RobT
Congrats on all your tests. I find it to be really inspiring!!
MC
08/06 cd4s 320 vl 900,000

Offline carousel

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Re: Analysis: HIV life expectancy now `normal`
« Reply #29 on: August 29, 2006, 06:35:29 AM »
.

« Last Edit: February 15, 2007, 11:10:43 AM by carousel »

Offline bocker3

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Re: Analysis: HIV life expectancy now `normal`
« Reply #30 on: August 29, 2006, 08:10:46 AM »
OK -- I have to add my 2 cents here.......

First, as others have pointed out, saying one may live a "normal life expectancy" is NOT the same as saying one may live a "normal live" (whatever that is....).  Am I hopeful that I will live at least as long as I would have without this damn virus.....  of course I am -- why would I be doing all I'm doing if I thought it was in vain.  If at some point down the road, I die due to an "AIDS illness", does that mean hiv cut my life short?  Perhaps -- but maybe not.  Let me explain -- Since I found out my status last year, I have made a number of changes to my life.  I eat better, exercise more, get more fiber, try to be aware of stress and do something about it, try to sleep more, floss daily etc.  Without these changes I may have been one of the many men in my family who was destined for an early demise from heart disease.  Of course, I still could die of heart disease, the point is, I didn't know when I was going to die before the virus and I don't know when I will with the virus. 
Today, I try to not get caught up in things I can't control -- I'm not perfect at this, as anyone who read my thread about not yet getting to undetectable can see, but I'm trying far more now than I did a year and 6 days ago, when I still thought I was "negative".  I do not mean to imply anyone is wrong in what has been said here -- indeed, there is a tremendous danger that people are getting a bit jaded about the dangers of hiv and there is a definite possibility that our "drain on the budget" will cause some changes.  We must insure that we keep people aware -- but giving those of us living with hiv some hope that we aren't going to die tomorrow from this virus (remember those early days after your diagnosis......) is not a bad thing in my book.  Is my life "normal" now??  Hell, no....  I hate taking these pills every night, hate having to be sure that I have something to eat with them, if I'm out and about at 9:30 in the evening, hate that I'm still scared to death on the rare occasions that I have sex with my (negative) partner -- no, this is not normal to how I was living a year ago.  It is, however, my "normal" now........ 
OK -- now I can go to work without having these thoughts in my head all day.  Thanks to all who share here -- it is so wonderful to read how others live with this virus and see that my "crazy" thoughts, aren't so crazy (or unique) after all.
Hugs!
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline penguin

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Re: Analysis: HIV life expectancy now `normal`
« Reply #31 on: August 29, 2006, 11:43:09 AM »
Normality though, it is subjective?  a difficult concept for the stats people, one that doesn’t fit so well into bar charts and percentages + power point presentations. impossible, too, to compile a research document which emcompasses everyone's experience of life with this virus..

The getting you, or me, or anyone with hiv, to their 75th birthday party, that is the measurable thing. Harder to quantify, the diarrhea that made you an hour late arriving, or the presents you couldn’t open cos of your neuropathy, or the birthday cake you chucked up in the shrubbery (or couldn’t eat in the first place, cos of your sky high cholestorol)

No, I’m not normal, whatever that means. HIV aside, I like marmite sandwiches and  obscure digital radio stations.
I am still here though, me + my multicoloured pills and whatever combination of side effects they give me, and that is, for the measurers, the tangible bit, and the point of this research?

Kate
« Last Edit: August 29, 2006, 11:47:06 AM by penguin »

Offline ONYXATL

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Re: Analysis: HIV life expectancy now `normal`
« Reply #32 on: August 29, 2006, 12:41:21 PM »
Yes, I truly understand and appreciate where you are coming from..unless someone is PWA or PWH, they do not know what it is like on a day-to-day basis...Hope you are feeling better...I am getting ready from the tropical storm down here in Florida...Have a nice safe and quiet weekend..Onyxatl

Offline bobik

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Re: Analysis: HIV life expectancy now `normal`
« Reply #33 on: August 29, 2006, 05:51:09 PM »
Hey Moffie,

I understand you completely.
Love you, man, hope to be able to hug you one day in real life!

Coen
Coen Honig at Facebook

Offline rosskie

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Re: Analysis: HIV life expectancy now `normal`
« Reply #34 on: August 30, 2006, 11:53:11 AM »
Who the hell wants to be 'normal'?  I'm much better than normal, and wasn't normal before I was HIV +.
 :o
G    ABC     D EEE GECC       
The ABCís of HIV Rxís  by K. Ross Thomas

C  D   D    EEE   F  G      EG     C   E  FG
If you think HIV is fun, normal, or not complex
G   F    E    D    CC     C   F    ED        C E  GECC
Let me tell you about the side effects of the Rxís
   GFED                FED (repeat)
Chorus:  You donít want the side effects
Canít live with the side effects.
CCC D   EF           G     GG         CE      CEFG    CG
AZT can suppress bone marrow causing anemia, I know
CCC,DDD,EEE,FFF,CE   CDEFG      CG
ddI, ddC, d4T, 3TC, acute pancreatitis, I know
CCC,DDD,EEE,FFF      CDEF     CDEF          CG
ddI, ddC, d4T, 3TC, peripheral neuropathy, I know
CDEF,    DDD, FFF,  CE      CDEF     CG
acyclovir, TDF, IND, kidney toxicity, I know
EEE DE      FG         F      G     CG     CG
EVF almost always drives you crazy, I know
CCC  D  E F   GFE     D EFG       D         EFG         CG
T20 is a pain in the ass, or wherever you inject it, Iíve heard
GFED                FED (repeat)
Chorus:  You donít want the side effects
Canít live with the side effects.

C       DDDD  E     F       CE    CDE         CG
Most NRTIís can cause lactic acidois, Iíve heard
CCCC, DDDDD.  EE     CE      CDEF   CG
NRTIís, NNRTIís, PIís, liver toxicity, I know
AAA,BBB,CCC. DDD  EEE   FFF GGG AAA
ABC, APV, ATZ, DLV, EFV, FPV, NVP, TVP
C       D     EFG          CG         CG
Can cause dangerous rashes, Iíve heard,
CCC  D   EE    F    G       C   DEFG     CG
ddI, most PIís can cause bad diarrhea, I know,
CCC D   E     F      EG       C   E   CEG
ddI can warp your vision, as can Viagra.
   CEG    CFA    CGB
Chorus: Viagra!  Viagra! Viagra!
C  DD   E        F   C  D    E  F     CG     GECC
Whatís even more fun is that if you combine Rxís,
  C    E     F      CEG        F    ED
With the same potential side effects,
C          DE        E   E  F     G      CG
Youíre almost sure to get them, I know.
C     D GECC C D   E   F   G   CEG        FED
All the Rxís have a long list of potential side effects,
CG        C      D    E F      G  FE
I know, Iíve had almost all of them.
GFED                FED (repeat)
Chorus:  You donít want the side effects
Canít live with the side effects.

C     DDDD  E    FFF  C     E      GEFG CGEC
Plus SSRIís and RTV are strong P450 inhibitors,
CC         D    E   EFG       E   F   EFG   EG      E  FF  GECC
Causing you to overdose on the usual dosage of other Rxís.
C      E         FE   D   C   G     F    G     C
But whatís extra fun is what we donít know
C      EEE GECC CD E     F           CG        GFE      FD
Most HIV Rxís never go through long-term clinical trials
C       CEDF                EG           C      DE  F      GG   GAB
Most combinations, cocktails, have never been tested together,
EE       D  C
Except in us.
C         D   GE       F
Weíre the guinea pigs,
DC   D    E          F  DF   C  GE    F
So if you donít want to be a guinea pig
C   D    FED           C EEE GECC
for the side effects of HIV Rxís
CC       DD         E    DF       G
Avoid catching the purple plague.
GFED                FED (repeat)
Chorus:  You donít want the side effects
Canít live with the side effects.
« Last Edit: September 01, 2006, 10:11:12 AM by rosskie »

Offline JLPinFTL

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Re: Analysis: HIV life expectancy now `normal`
« Reply #35 on: August 30, 2006, 01:49:57 PM »
I agree with blondbeauty.  we're in a whole lot better situation then 20 or 10 years ago.  sure it sucks to have all the side-effects but we're still alive...   

I don't like people implying the war against AIDS is over when it's barely begun. 

But we're fortunate not to have been diagnosed 10 years ago!

Offline Tim H

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Re: Analysis: HIV life expectancy now `normal`
« Reply #36 on: August 30, 2006, 02:57:11 PM »
Let's see:  I spent eight years being told I was going to die of an infection that was inevitably fatal, seven years on an early clinical trial where my doctors were guardedly optimistic, and the last seven years on a series of treatments that sequentially promised me some tentative extention of my lifespan.

A certain amount of fatalism has been inevitably bred into my bone at this point -- I suspect that the combination of long-term infection, a series of (decreasingly) toxic treatments and the onslaught of sexually transmitted diseases I experienced in the late 1970's and early 1980's will take their tolls eventually: I had a precancerous  anal wart removed last December, and might be able to hold out until there is an effective treatmentment for HPV or Anal Cancer.     

I suppose being told that I might have a normal lifespan is a lovely piece of headline rhetoric, but like much AIDS reporting, is unthinkingly cruel to those of us who live with this every day.  I know I am lucky to have the ability and the resources to live with this disease, but that doesn't make it easy.  Desperate for good news, I still have to remember that the virus will always stay with me.

 


Offline jmorti

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  • Posts: 5
Re: Analysis: HIV life expectancy now `normal`
« Reply #37 on: August 30, 2006, 03:06:22 PM »
...for a newly diagnosed person, I NEED to hear that there is hope.  I NEED to know that maybe I'll be around to see a cure.

David

I couldn't agree with this statement more, David.  I'm only 2 weeks into my diagnosis and 2 weeks on meds...but to have the hope of living out life, even if it's with the side effects of my meds and knowing the obstacles I'll have to face, it helps me get through the day.  I am a funeral director and I deal with death on a daily basis, but when you're faced with your own mortality it scares the sh*t out of you.  My biggest fear is my mother having to attend my funeral.  I dread the day that I have to attend hers, but I'd much rather be the one going to hers, than her going to mine.  At this point, my goal is to outlive her...hopefully with the help of medications, healthy eating, and exercise I will live well beyond even that.
"Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." -- Dr. Seuss

Offline bertbear

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Re: Analysis: HIV life expectancy now `normal`
« Reply #38 on: August 30, 2006, 03:31:38 PM »
hey guys,
I just read all the posts and agree with most all of what was said.

I saw my first friend covered with Kaposi's in 1982.He died soon after. Many of my friends committed suicide over the years til '95 and the birth of the protease era.That's when AIDS ended, right?
Of al my friends who tested poz when the initial testing became availabvle until '95, there are only three of us still living
I thank the universe I am one of those lucky ones, though I have about every side effect you can list from the HIV and antiretrovirals.
Neuropathy, lipos- distrophy and -atrophy, chronic sinusitis, heart attack,diabetes, buffalo hump, neck nodules etc. and more MRI's, Ct scans, Pt scans than I can count
My business went bankrupt in '98 during my AIDS year and I lived on welfare 'til medicare and medicaid kicked in 2 years later.
I had my first Sculptra injectios last night by way of a patient assistance program provided by Dermianfter living with a gargoyle face for 7 years.All (you bare chested, semi nude photo guys take note),
After all of that I would not trade one nanosecond of the life I have for the alternative.
August '98 52 t cells, vl in the multimillions
MAC, PCP, Thrush, heart attack.

August '06 VL- <50 (since reyataz  2 1/2 yrs ago)
t cells 726
 still alive and kicking !!!

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Analysis: HIV life expectancy now `normal`
« Reply #39 on: August 30, 2006, 03:47:49 PM »
I see there are a load of guys and gals posting in this thread for their very first time.  Some of you are newly diagnosed, and others like Bertbear, not so much.  From where I sit, I want to welcome each and every one of you to this fine place, and please feel free to start an introduction thread for us all to see.

If any of you want to read a story from one other old timer, my life story is contained right here in the Blogs, and it starts last August.  I haven't posted recently, due to my re-adjustment to Trizivir.  I said re-adjustment, simply because my body is highly allergic to AZT, and I almost died in '96 due to complications from this damn poison.  I had to start in June taking this drug, because my virus mutated into one that is only affected by AZT.  I am now adjusting better and have only waves of nausea, but they of course, always come on when I need them least. 

Anyway, welcome all you new guys, and please make yourselves comfortable, this is a neat family of folks and our motto is "It's OK, I understand, I'm HIV+ too". (please note, this was not the creation of the owners, but us who are registered here.

In Love and Suport.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline spock

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  • Posts: 7
Re: Analysis: HIV life expectancy now `normal`
« Reply #40 on: August 30, 2006, 03:58:51 PM »
Life and quality of Life are two different concepts. I don't feel any of us have the same "quality" of life that we once had....but maybe that is a small price to pay for extension of time. I agree with the posters that the word "normal" is an inappropriate word to use for anyone with HIV/AIDS. Lymphoma, radiation galore, chemo galore, side effects galore from the multitude of meds for other related conditions (not counting the HIV meds) all taking thier daily toll as well as keeping me living........"normal?"......I don't think so.
We have to get this current Congress changed on November 7th so we can make sure the current President and his gang in both Houses do not let the HHS report become reality.

Offline newt

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  • the one and original newt
Re: Analysis: HIV life expectancy now `normal`
« Reply #41 on: August 30, 2006, 05:13:44 PM »
I feel normal (sorry, perhaps) - matt
« Last Edit: August 30, 2006, 05:38:24 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Pozjoenrancho

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Re: Analysis: HIV life expectancy now `normal`
« Reply #42 on: August 30, 2006, 06:17:17 PM »
I'm confused as to who's definition of "normal" you are using.

If "normal" is a man that works hard and plays just as hard both sexually and not, can afford his life style with a $36,000 gross a year job, the only drugs that he takes is Tylenol and antibiotics, breaks out in a cold sweat at the thought of a flu shot, can feel the difference between a peach and sand paper, gets a good night's sleep, has routine rest room habits, and may live a enjoyable life to a ripe age of 101. Then no, I.m not "normal" but I was.

If "normal" is a man who can no longer work And can't afford to play on his 12,900 net SSD a year, when he tells a potential sex partner he has A.I.D.S. has sex alone, who can count people (other than biological family) that are willing to visit with him on one hand, the remaining people seem to fear the air that he breaths, Takes as much drugs as his 66 year old parents and has to include jell tabs of THC for nausea and vomiting and whenthe jell tabs don't work uses inhaled THC (legal in California for medicinal purpose) because he cant stick himself with a needle yet and can't keep a suppository in long enough to dissolve, has had blood drawn so much that he has scar tissue and can draw blood on others with the best lab tech, who's hands and feet are numb 99% of the time, has not slept more than two hours in years with out a sleep aid (because of fear of dependency sleeps every third night), who's rest room habits include alternating between a cork and TNT as an aid, and may live a miserable life to a ripe old age of 101.  Then yes, I'm living a "normal" life.

Joe ???

PS Tell me. Why do I bother?
« Last Edit: August 30, 2006, 07:21:12 PM by Pozjoenrancho »
Exposed 11/23/1989 at approximately 6:00 PM
Positive anonymous test 2/2/1990
Treatment started 1/7/1991 with AZT
stopped treatment, still responding and tolerating AZT 3/4/2001 when lover of 13 years died
First cocktail 12/1/2004 Truvada, Reyataz and Norvir CD-4 = 138, VL = TNTC
restarted life 12/25/2005 CD-4 = 552, VL = undetectable

Offline blondbeauty

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Re: Analysis: HIV life expectancy now `normal`
« Reply #43 on: August 30, 2006, 07:11:07 PM »
I also feel normal Matt...and I trust what Drs say about HIV today.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline newt

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Re: Analysis: HIV life expectancy now `normal`
« Reply #44 on: August 30, 2006, 07:26:21 PM »
I do not wish to set my experience (nb: MY experience) against others, or say it's comparable or the rule even, esp. people in the throes of getting round a new HIV diagnosis, or having a shit time, probs with access to meds etc.  But right now, right here I do feel normal, and have a normal quality of life for my age n income. Living in England helps.

I had a long talk with my ex about "normal".  He said: even though intellectually he KNOWS he's okay emotionally he FEELS (well FELT) "unviable" because of HIV, like did he have a future? what would happen etc? I was a realisation, precipitated by falling for someone, that overall  (in his EXACT words) "HIV is not that important" that kicked him into thinking he was, er, viable. One thing he said which improved his life was stopping reading news about HIV/HIV meds.

I concede the occasional crap mornings to Norvir nausea.  I DO concede this. I even concede this isn't "normal".   But (1) people without HIV have non-normal mornings (2) I still FEEL normal. even when my stomach's churning.  I feel, hmm, legitimate as a person. Yes, that's it.

Like I said here a while back (this explains why and when).

I am sorry if this upsets anyone who's having a shit time or disgees with me. Truly.  But I reckon more people feel like me than care to say (perhaps out of respect, eh?).

- matt

Now playing: Suede, Saturday Night
« Last Edit: August 30, 2006, 07:28:26 PM by newt »
"The object is to be a well patient, not a good patient"

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: Analysis: HIV life expectancy now `normal`
« Reply #45 on: August 30, 2006, 08:18:20 PM »
I totally understand how some people might need to only hear the most optimistic and positive (no pun intended) side of HIV treatment and prognosis. But I also understand that this desire is motivated out of fear, with potentially dangerous results.

Someone might want so badly to hear only the good stuff that they do not research (or they dismiss) the side effects, long and short term, of the meds they might be taking. They are the ones I personally worry about, because they are the ones who do not recognize a rash for SJS, or serious drug allergy. They are the ones who, having been dismissive of the experiences of others, are perplexed when long term CNS effects of Sustiva manifest themselves.

They are the ones more likely to die, ironically. Because they were too afraid to view their illness and it's treatment in it's full reality.

But in the meantime, they are the folks who casually, even defensively, dismiss the experiences of others as outdated and antiquated. They are the ones who demean HIV activism and research because it makes them uncomfortable. They are the ones who simply wil not hear of the pandemic past the drug company rhetoric, or the well-meaning but ill-considered pandering by physicians who have little interest in research or science.

And of course, on the opposite end of the spectrum are people who are so entrenched with their illness, who have spent decades defined by it, who reject out of hand any optimistic or positive news. Because so many times, such messages have been proven disasterously wrong. And moreover, it serves to further isolate people with a wealth of experience and wisdom as regards HIV. It implies, when it does not state outright, that they have nothing to add to the current conversation, and that their experiences are of historical, not practical value.

Any decision based on fear is likely to have serious negative consequences.

Me, I am a skeptic. I need to see the data, and even then, need to make sure it's quantifiable and repeatable. And frankly, we do not have data in that states for a certainty that we have a normal life span. What we have are projections, some perfectly valid, based on the data gathered thus far. But "thus far" is only a normal life span if you are a golden retriever. A human's life span is roughly seventy-odd years. So when this report comes back in, say, 2030, I will pay far closer attention.

In the meantime, it's not about a promise of a future. It's about making today count. It's not about squeaking by those precious extra seconds of life, but about the quanity of those moments.

And any moment we give over to fear is, in my opinion, wasted time.


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Life

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  • Member 2005
Re: Analysis: HIV life expectancy now `normal`
« Reply #46 on: August 30, 2006, 08:37:27 PM »
This topic brings alot of people out to register to make their message and concerns heard.. 4 new Members, Wow..  Welcome to the forums... ;)


Offline blondbeauty

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Re: Analysis: HIV life expectancy now `normal`
« Reply #47 on: August 30, 2006, 08:39:15 PM »
This is what Dr. Gatell says about HIV today.

http://www.abc.es/20060813/sociedad-sanidad/sida-solo-falta-vacuna_200608130247.html

Ill translate one of his answers:

- we do not know if the treatments that we are using will show to be toxic in the next 15 or 20 years. It is better not to become infected than relying too much on meds.

http://actualidad.terra.es/sociedad/articulo/generalitat_sida_creara_institutos_investigacion_1049411.htm
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline alive2

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Re: Analysis: HIV life expectancy now `normal`
« Reply #48 on: August 30, 2006, 09:29:10 PM »
 i want to reflect what i feel is normal,normal to me is waking up feeling like crap,sick in my stomach,not sleeping well,its normal for us to feel this way,normal is only relitive to how i felt the day before,so yes we are all normal here.it is the people who arent afflicted by this disease who arent normal.i still run every day,to the bathroom,exercise.drive sure i drive my freinds nutty.walking yes as soon as im done with the running.
if you were born blind, and you dont have a perception of colors but were told they are there,is no different than us,we know what health is we just dont get to experience it often if at all,but does that mean it dosent exsist?so yes i feel normal i still use my hands,the term in the sence of life is relitive to the previous day, be it good or bad,if we suffer then its normal to wake up expecting to feel like crap,but if we wake in the morning and feel good then i call that an exceptional day,not abnormal.im still married(thanks to eric,he helped me alot to see the light of day)and my wife still gripes at me thats normal,she has all along :) ,so yes i feel normal to the sence i still have air in my lungs,at least when im not inhaling,yes i inhale.the only things different are pills,and the approach i take to daily life,im sober,eat well,and exercise by running(just to the can).whos to say were the abnormal ones?were different i agree there but never abnormal.take care
« Last Edit: August 30, 2006, 09:44:10 PM by alive2 »

Offline Eldon

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Re: Analysis: HIV life expectancy now `normal`
« Reply #49 on: August 30, 2006, 09:36:58 PM »
Juan, Here is a translation of the article you posted:

Ten years later of which Vancouver presented/displayed al world the medication that the life to the infected ones by the VIH gave back, the virus del AIDS, Canada returns to raise the flag of the fight against the pandemic.

The investigator of Clinical of Barcelona Jose Maria Gatell does not wait for great scientific advances of this encounter. "the present therapies are already effective almost to the one hundred percent", affirms. But it is left much to make in prevention and solidarity. - It is possible to wait for of this encounter something as revolutionary as what it was lived in Vancouver in 1996? - No. When you are at the beginning of a disease and there is almost nothing no to fight it, you can give a great jump and happen almost from 0% to the 100%.

The things are very outposts in the field of the treatment. The only great advance that could occur in the world of AIDS is that it appeared a vaccine, but that is not going to happen in Toronto. - Twenty-five years after the first case, AIDS adds 40 million of infected and 25 million deads. He is not paradoxical after the experienced advances? - we have advanced in the treatment, but not in the prevention.

The prevention requires a vaccine or a change of conduct. Nothing of that has been obtained. - It is possible to give antirretroviral therapy to all the infected ones with the important thing that it is to fulfill the therapy? - Until the conference of Barcelona of 2002 one thought that the treatment was so complex that in the developing world he was not feasible. Barcelona changed that thought. - In what sense? - We saw two things. One, that the two arms in which it must lean the fight against AIDS are the prevention and the treatment.

Second it is that if a minimum of sanitary infrastructure is had medicines and, the results are so good in Nigeria as in Barcelona. - It is possible to stop the pandemic? - To stop the pandemic is only possible with the prevention. In the history of the infectious diseases it has been only managed to stop an epidemic when it has been had an effective vaccine. Think about that the only diseases that have been eradicated, or almost, have been the smallpox, the poliomielitis and the measles. If there is no a vaccine, people will continue becoming infected. - Toronto is celebrated under the motto "Is time to fulfill". Lack international commitment? - the situation has improved.

The political, social and economic commitment is greater of the one than we had ten years ago, although you gave to much of which would be desirable. Said this, also it is certain that that commitment not only has to arrive from the rich world, but also of the developing countries. - Help in something the messages in favor of sexual abstinence? - If there are no sexual relations, there will be diseases of sexual no transmission. But to base the strategy against a disease like AIDS on a recommendation that is not realistic, does not contribute to improve the situation. - the Spanish young people more and more use the postcoital pill like contraceptive, which exposes to them to infections. - the only weapon of effective protection which we know against the diseases of sexual transmission is the preservative and is necessary to leave it clear. - is had lost the fear to AIDS? - the preventive measures against AIDS do not please in certain sectors of population, that try to diminish the problem.

They say that AIDS is a chronic disease, that has a simple treatment and that if you infect to you, will already treat to you. This is necessary to clarify it. - AclŠrelo. - we do not know if the treatments that we used are very toxic to the 15 or 20 years. It is not necessary to trust the medication, but to try not to become infected. - will be known someday a vaccine with which pinchazo is enough to be prote'ge'? - There is virus with certain similarities to the one of AIDS for which we have effective vaccines; but there are others, like the one of herpes simple, as opposed to which we took to years looking for an antidote without success. It is not possible to be discarded that we fail in the mid term. - It works in a therapeutic vaccine that can control the disease without medication. He is this more feasible? - a substance that is a good therapeutic vaccine can end up vice versa becoming a preventive vaccine and. Both persecute that the immune system controls the infection.


Offline Jacques

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Re: Analysis: HIV life expectancy now `normal`
« Reply #50 on: August 30, 2006, 11:54:01 PM »
Dr. Gatel :
Quote
we do not know if the treatments that we used are very toxic to the 15 or 20 years.

Well, if Dr.Gatel doesn't know about hiv drugs toxicity,  he
should come right here on the forum.  We will explain to him.

Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline palmspringsEMT

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Re: Analysis: HIV life expectancy now `normal`
« Reply #51 on: August 31, 2006, 01:44:09 AM »

There isn't a day goes by that I am not worried about the future. in 1991 I walked into my doctors office for the first time. She said you have 2 or 3 years. I really didn't think I heard her right, except I did. By the way I'm still here.  I started taking meds in 1997 and it has been a "NORMAL" part of my life ever since.
I take care of all kinds of sick and injured people ever day! Not all of them have HIV or AIDS. Some get in traffic collisions, some have CHF. Sometimes my patients are babies, sometimes they are 100+ years old. One thing I know is most of the people I come in contact are on some kind of medication, for some ailment. This is normal in my world!!! The difference between me and them, I take care of them!!!

HIV+ Since 1991

Offline simon2

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Re: Analysis: HIV life expectancy now `normal`
« Reply #52 on: August 31, 2006, 03:43:34 AM »
In the words of the song, can we "accentuate the positive (even if it is HIV-Poz?" and (something something) de-emphasize? the negative, and don't mess with Mr. In-Between!"
C'mon, you glass half-empty whiners! This is great news! Let's celebrate and hope for more advances and fine-tuning in our medications. I, for one, am very grateful that my one-year old diagnosis of HIV+ is not an automatic death sentence.
Thank-you God, scientists, doctors, drug-companies, and all my fellow HIV-Poz people for giving me these "extra" years of life! We owe it to each other to cheer each other on!
Simon, who expects a normal life!
simon2blues

Offline HIVworker

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Re: Analysis: HIV life expectancy now `normal`
« Reply #53 on: August 31, 2006, 08:47:46 AM »
Clearly "Normal" in this case refers to longevity of life and nothing more. It doesn't say, "HIV positive people can lead normal life" it says, "Life expectancy" and that always refers to longevity. I don't know why this misinterpretation occurred?

This dictionary definition of "Life expectancy" is "How long a person is predicted to live based on statistics"

So why add all the stuff about them saying "Normal" to be "HIV positive people can have a normal life". There is no way you can cut it and get it to mean that.

Rich
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline David_CA

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Re: Analysis: HIV life expectancy now `normal`
« Reply #54 on: August 31, 2006, 10:16:01 AM »
I totally understand how some people might need to only hear the most optimistic and positive (no pun intended) side of HIV treatment and prognosis. But I also understand that this desire is motivated out of fear, with potentially dangerous results.

Someone might want so badly to hear only the good stuff that they do not research (or they dismiss) the side effects, long and short term, of the meds they might be taking. They are the ones I personally worry about, because they are the ones who do not recognize a rash for SJS, or serious drug allergy. They are the ones who, having been dismissive of the experiences of others, are perplexed when long term CNS effects of Sustiva manifest themselves.

They are the ones more likely to die, ironically. Because they were too afraid to view their illness and it's treatment in it's full reality.

But in the meantime, they are the folks who casually, even defensively, dismiss the experiences of others as outdated and antiquated. They are the ones who demean HIV activism and research because it makes them uncomfortable. They are the ones who simply Will not hear of the pandemic past the drug company rhetoric, or the well-meaning but ill-considered pandering by physicians who have little interest in research or science.

And of course, on the opposite end of the spectrum are people who are so entrenched with their illness, who have spent decades defined by it, who reject out of hand any optimistic or positive news. Because so many times, such messages have been proven disastrously wrong. And moreover, it serves to further isolate people with a wealth of experience and wisdom as regards HIV. It implies, when it does not state outright, that they have nothing to add to the current conversation, and that their experiences are of historical, not practical value.

Any decision based on fear is likely to have serious negative consequences.

Me, I am a skeptic. I need to see the data, and even then, need to make sure it's quantifiable and repeatable. And frankly, we do not have data in that states for a certainty that we have a normal life span. What we have are projections, some perfectly valid, based on the data gathered thus far. But "thus far" is only a normal life span if you are a golden retriever. A human's life span is roughly seventy-odd years. So when this report comes back in, say, 2030, I will pay far closer attention.

In the meantime, it's not about a promise of a future. It's about making today count. It's not about squeaking by those precious extra seconds of life, but about the quanity of those moments.

And any moment we give over to fear is, in my opinion, wasted time.


I tend to be middle-of-the-road in just about everything.  I want to hear the positive aspects, but not out of fear.  It's to balance out all the negatives that I KNOW exists.  Without the optimism, it's easy to get into the mindset that drugs will fail, that I will have all these side effects, that I will be miserable, etc.  Why even try?  I personally know people, HIV+ for over 12 years, that function fine.  They don't have side effects to mention.  They are fortunate.  Is there anything wrong with hoping that I can be as fortunate (while accepting that I may not be)?

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline pshornyguy

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Re: Analysis: HIV life expectancy now `normal`
« Reply #55 on: August 31, 2006, 12:21:49 PM »
The issues we confront from being poz probably are quantitatively and qualitatively different from individuals who suffer from other chronic medical problems -- but I think one of the most difficult issues is not often discussed candidly.

Gay men (especially younger guys 18-40) are much more focused on their body image and their sexual appeal and all the intimate experiences they anticipate in their future.  However, one's self-image and self-esteem can be directly and adversely impacted by HIV. Consequently, HIV can have devestating psychological effects over and above any physical problems we all confront.

As a "humorous" personal illustration of this from my life: 

In 2001 I was living in San Francisco and planning to retire to Palm Springs the next year.  My mind and emotions were really in a good place.  My health was fine and I looked forward to living in the gay-friendly environment of Palm Springs, making new friends, enjoying the natural beauty of the desert (and the lower cost of living--lol) and being part of such a sexually-stimulating environment.

In late 2001 I went to see my doctor for a routine visit and he asked me how long I had the then-small fat deposit on the back of my neck.  I had never even noticed it before his question.  At the time, it seemed like a very insignificant matter, and, frankly, it didn't even register on my emotional radar screen. 

However, within a year, the almost imperceptible neck fat deposit had grown into full fledged "buffalo hump" status and shirts no longer fit me properly.  Not long after that, it became very apparent that guys were no longer interested in me because of the physical changes to my body. So my 2001 positive attitude and dreams about the joys of retirement quickly evaporated into the reality of what HIV can do to all of us.

Obviously, none of us will ever fully reclaim a "normal" life but we all have to make the journey through life and cope with whatever comes along.
« Last Edit: August 31, 2006, 12:23:41 PM by pshornyguy »

Offline HIVworker

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Re: Analysis: HIV life expectancy now `normal`
« Reply #56 on: August 31, 2006, 06:33:23 PM »
Yah but it doesn't say, "You will have a normal life," it says "You could have a normal life expectancy."..as in you could live as long as anyone else
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline Ann

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Re: Analysis: HIV life expectancy now `normal`
« Reply #57 on: September 01, 2006, 03:48:43 AM »
Rich,

I guess when those of us who live with this delightful little virus in our bodies see something like "normal life expectancy" the first thing we think of - even while knowing what is actually meant - is the fact that we didn't expect "normal life" to be like this. It's a gut reaction to be sure, but it's the reaction many of us have nonetheless.

There are other ways of getting the message across without using the word "normal" that so many positive people do not identify with as something to describe our lives. They could just as easily say "hiv positive people today may live as long as anyone else". It skirts the issues of "expectations" and "normalcy". It's wordier, sure, but it's also more to the point.

A matter of semantics? You betcha. Is it important? ~shrug~ Yeah, to me I guess it is. Earth-shatteringly important? Perhaps. If it's giving people who are still negative the wrong impression, then yes. It just might shatter the earth of a person or two who gets the idea that hiv isn't a big deal anymore and ends up positive as a result.

Ann
« Last Edit: September 01, 2006, 03:50:31 AM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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

Offline HIVworker

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Re: Analysis: HIV life expectancy now `normal`
« Reply #58 on: September 01, 2006, 07:20:32 AM »
A lucid and well thought out argument. Thanks Ann for pointing that out. I guess the term "Normal life expectancy" is something they borrowed from cancer, another disease that medicine is helping make less-fatal. As in, "Patients taking tamoxifen could have a normal life expectancy."

I'll tell you one thing about this thread though. From someone who works inside the industry, we are no longer fixated on making a drug that works, but one that works with less-frequent doses and fewer side effects and fewer resistance mutations (all the industry is geared to that). So one would hope that these new drugs continue to improve the expectation that someone living with HIV will live as long as someone without HIV, it also might improve the anxiety due brought by the potential for resistance, lower the side effects and help keep treatment simple. I think that is all that can be done in the absence of the cure - which everyone is working on too. While it won't lead to a 'normal life' one would hope it would be an improvement over current therapy.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline fearless

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Re: Analysis: HIV life expectancy now `normal`
« Reply #59 on: September 01, 2006, 08:03:09 AM »
yeah, yeah, yeah. I don't think anyone is missing the distinction between 'normal life expectancy' and 'normal life', although I suspect what the doctor actually meant is 'average life expectancy'. In stats the 'normal' means something different to 'average'.

Like JK, I will believe the doctor when the first children born with HIV starting reaching the average life expectancy.

When I see someone like this getting up and pronouncing to the world that we can expect to live to a nice old age and that somehow we should all be grateful for this, I just get so angry. I'm sure he is well meaning but without living our lives each day he/they simply cannot understand what we go through, no matter how much they try. At the end of the day they close the surgery door and return to their comfortable lives.

Personally, I don't give a rats arse if I live till I'm 75 or 80, slowly shitting myself to death for the next 40 years or so. I'd happily trade that to have 5 years of quality life. I don't live a life at the moment, I simply exist in a daze of perpetual physical and mental side effects, which most physicians seem to simply dismiss or are unable to comprehend how debilitating and soul destroying these things really are.

« Last Edit: September 01, 2006, 12:34:06 PM by fearless »
Be forgiving, be grateful, be optimistic

Offline Razorbill

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Re: Analysis: HIV life expectancy now `normal`
« Reply #60 on: September 01, 2006, 08:48:56 AM »
I'd just like to weigh in, knowing full well that will open me up to criticism and negative head trips, and perhaps some support.
 
   I have been swallowing molecular poisons now for 6 years.  At the start of treatment I was at tcell 200 and vl 350k.  Now I'm at 360 and 0, w/21% ratio.  Drugs are no fun, the gastrointestinal side effects in particular. i have switched a couple regimens due to the diarrhea and stomach upset.  On balance, all has gone well.  I have been considering of late my future.  What about retirement?  Should I put extra money aside, in addition to my SS and teachers' retirement?  Until recently I haven't been too motivated to do so.  Now I am revisiting that thought. My doctor says I should plan on it.

   I understand the suffering of those who have had it rough on the drugs and who have been damaged by the virus itself in the years before effective treatment. I've taken my share of hits.  For me personally, the path has been one of healthy living and exercise.  I'm a gym rat, and love long (25-50 miles) bike rides. I eat right and avoid dairy.  I DO NOT SMOKE.

Quote
'We know the benefits of antiretrovirals far outweigh the risk of heart disease,' Daar said. And he said that before getting too worried about what regimen to use to protect specific organs, doctors would be wise to have HIV patients get other risk factors under control -- including cessation of smoking.

  My bilirubin and triglycerides are screwed up - but hey they're just numbers.  When my diarrhea was at it's worst, maybe I'd have to leave my exercise class a few times or ditch my bike and head into the woods (sorry for the indelicacy) - but I'd go back.  There isn't anything the human mind cannot overcome - indeed no reality it cannot create good or bad. 
 
  I have never had neuropathy or any of the other degenerative effects of the virus. But fat and smoke cannot possibly be of help.  Why give strength to your enemies?  I know that I have to be ready to live out several more decades.  Hooray for me.  Of course that leaves unresolved the question of loneliness for lack of a partner, or finances (always a bit messy - all that damn travel!), but they too shall fall to force of will. 
 
  The greatest frontier is the inner one.

Offline HIVworker

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Re: Analysis: HIV life expectancy now `normal`
« Reply #61 on: September 01, 2006, 08:59:20 AM »
When I see someone like this getting up and pronouncing to the world that we can expect to live to a nice old age and that somehow we should all be grateful for this, I just get so angry.

Where does he say that you should be grateful for this? I see the bit where he mentions that people living with HIV still face significant barriers of treatment adherence and resistance. I must have missed the bit where he said you should be grateful to him for you lives. Or are you just inserting that because that is what it 'feels' he is saying? When I read that report I read it as an explanation of data and not him patting you on the head and telling you to be grateful. I'd jump in with you and call him whatever if he did.

It's strange that people would focus on this issue and almost skip over the more alarming parts of that report. (edit : with the exception of the poster above me)

Rich
« Last Edit: September 01, 2006, 09:01:03 AM by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline fearless

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Re: Analysis: HIV life expectancy now `normal`
« Reply #62 on: September 01, 2006, 11:57:29 AM »
With all due respect Rich, I did not say that I/we need to 'be grateful to him for our lives' but to me the article was all positive spin about how treatments, if you have access and adhere, are 'so good' and 'well-tolerated' that we can look forward to living to a ripe old age. This is good news but it totally ignores the fact that for many of us the medications are NOT WELL-TOLERATED, and it is not just the physical effects but also how the physical effects can lead to intolerable psycholgical effects for some us. The article is nearly silent on these effects, dismissive at best ie "before getting too worried about what regimen to use to protect specific organs, doctors would be wise to have HIV patients get other risk factors under control".

I'm not trying to attack him or you and i truly appreciate what the medical and scientific professions are doing, but unless and until you wake each and every morning feeling like throwing up and with explosive diarrhoea knowing that you have to take another dose of medication despite feeling like shit you cannot begin to appreciate what I, and many others, go through 24/7. And this is the sense I get from my doctor sometimes. He does his best but he has thousands of people walking through his door each year saying what I'm saying and he must become desensitised over time. So, sometimes I feel that unless I jump up and down and demand action the gravity of my side effects is not fully appreciated.

I can actually live with the physical side effects despite the fact that they are incredibly frustrating and I have to rearrange my daily life around them. That is the manageable bit, but I am having great difficulty coping with resultant psychological effects.  I have lost all confidence in my own abilities, I'm tentative and unsure at work, feel like I am letting everybody down, anxious in social situations, longing for effection, isolated. I feel like a failure in every sense of the word. A failure in my personal life, a failure in my career, and a failure as a person. Twice a day I am reminded of my failings as I take my medication, and the medication itself is a sign that my immune system is also failing.

Maybe I misread it, but I didn't get a sense of these things being acknowledged in the article.

I used to be a happy, contented individual who loved his job and his life. I live a healthy life, I eat well, I exercise, I've increased my lean body mass. I try to do all the right things. But, at the moment I just cannot get excited about the prospect of another 40 years of this. Yes, the glass is half full - half full of vomit.

In peace and respect.

Steve

« Last Edit: September 01, 2006, 12:08:28 PM by fearless »
Be forgiving, be grateful, be optimistic

Offline indenu

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Re: Analysis: HIV life expectancy now `normal`
« Reply #63 on: September 01, 2006, 12:23:29 PM »
i hope all of the rest of the community now start treating people with HIV as normal.... when you apply for visas to enter countries you are asked if you have HIV and are denied if you do .... this is not normal

Offline HIVworker

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Re: Analysis: HIV life expectancy now `normal`
« Reply #64 on: September 01, 2006, 12:33:56 PM »
Fearless,

I see your point. It was hard not to, you explained it very well. The point about tolerance is actually well taken. I don't think that I will ever know what it is like to experience what you said unless I either go through it or have something similar like chemotherapy for cancer. I do, however, get the message you are saying...which is honestly the best I can do without having to go through it.

Tolerance is better possibly than it was, but nowhere near good enough. I accept that point and more should be done. I can understand now, given the argument you put across, why such points about tolerance make you so frustrated...for the general public are less likely to understand the problem and just add, "But drugs are well tolerated" to the "HIV can be cured, look at Magic.." list of incorrect things often said about HIV.

Part of the reason I come on this site is to be educated about such things and logically I can see your argument. I feel that work being done in a lot of places will help tolerance - simplifying therapy (decreasing number of drugs) is one way of doing that - better still give someone something that will allow them to live without drugs for a while.

Either way, thanks for taking time to correct me.

Rich

PS. re-reading my own post I was guilty of adding my own spin on your comment "grateful for my life" I guess I am still confused as to what you think you should be grateful for.
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline fearless

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Re: Analysis: HIV life expectancy now `normal`
« Reply #65 on: September 01, 2006, 12:44:49 PM »
Just poor language choice on my behalf and my mental state Rich, I guess.
Everything gets filtered through my fucked up head at the moment. It doesn't always come out right.
But alas, all is not lost - I started therapy this week.
I just wanna be happy again.

edit: having slept on this Rich, you are spot on about my use of 'grateful', in that it is my projection of what I read into the article. In a sense I am grateful though, grateful that for me a relative newbie (3 years poz) this isn't a death sentence, that I do have a future, that in relative terms this is much easier for me than it was for those diagnosed pre-HAART. It can just be hard to see that sometimes.

One of the things that has got me through the trials and tribulations that we all go through in our lives has been my ability to maintain a positive attitude, to see the light at the end of the tunnel, to know that tomorrow is a new day. Unfortunately though, the physical side-effects have quietly chipped away at my state of mind one day at a time. It was Ann's recent blog, a photograph taken of me and an off the cuff remark by a friend that made me realise what was happening to me. Initially, even acknowledging this reinforced that sense of failure I mentioned. That realisation that my mind, the thing that has got me through so many difficult times, was failing me was devastating and so the cycle continued. To have to reach out and seek help, well...

My first therapy session has given me lots of food for thought, and much of that food is unpleasant and stirring up a hole myriad of thoughts and feelings, mostly still negative at this stage. But at least it has got me thinking and trying to re-engage with the world around me. They're just baby steps at the moment, but they are steps nonetheless and this morning I'm even a little optimistic that I can get on top of this.

Anyway, this is probably enough for now. I have some challenges to face today - getting motivated enough to bother taking a shower and overcoming the anxiety that I am already starting to feel in my chest at the prospect of leaving the house to see some art with a friend on what is shaping up as a glorious spring day in Sydney.
« Last Edit: September 01, 2006, 07:28:23 PM by fearless »
Be forgiving, be grateful, be optimistic

Offline davidmk

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Re: Analysis: HIV life expectancy now `normal`
« Reply #66 on: September 01, 2006, 02:29:15 PM »
I had to laugh after reading "normal HIV life expectancy" article.  I have been poz for 20 years.  I have never been sick.  I have taken every HIV med there is.  I'm not sure what a normal life is anymore.  It sure isn't the life I had 20 years ago or even close.  Saying I've never been sick is not the same as saying I've not had problems.  The meds I've taken have taken it's toll on my body.  Where I used to be firm and tight ...I am now soft and fat.  I get tired.  I get tired alot.  I used to have boyfriends...I used to have dates...Now I sit at home alone on Sat. night.  I've seen every episode of Law and Order at least five times.  I try and remember.  Yes, I have friends...yes, I go out.  I do things.  I volunteer.  I go to the gym...but somehow it just isn't the same.  Is this just getting older? or is this just life with HIV?  Should I be happy just to be alive?  I am...but there is that something missing that I will never have back again.  Does anyone have any advice?  I'm not feeling sorry for my self...I'm really not....but maybe my life now is the norm.  I just don't know.

Offline blondbeauty

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Re: Analysis: HIV life expectancy now `normal`
« Reply #67 on: September 02, 2006, 10:11:02 AM »
Thank you for the translation Eldon!
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline elppoz45

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Re: Analysis: HIV life expectancy now `normal`
« Reply #68 on: September 02, 2006, 12:41:39 PM »
Whoa, guys and gals, lots of understandable anger out there, but, come on, we're alive and living; whereas, a great deal of our friends and lovers (we of a certain age) have gone...FOREVER! I'm certainly not going to speak for the dead, but my hunch is that they would be slapping us silly for bitchin' about being ALIVE! Negativity is negativity, and for some people it gives them the necessary psychological tools to deal! More power to you. Conversely, however, this optimist in me believes that if you would've told me in 1994 that I would be writing this post, I would've called you a damn liar! Look who ate the canary, now! <g>

This article is not a point-of-departure to tear into Big Pharma, lament about having to take pills, quarterly visits to the doc, lypo, nausea, etc., etc. It's simple validation of what our docs have been telling us: let's do our best to keep the viral load down as low as possible. I'm on the fence with this indictment of Big Pharma as the big bad bully in all of this. They need the dollars from "the west" to continue their R&D programs, and like it our not, this is a capitalistic society and they have to keep their shareholders happy.

Heck, I, too, had everything in order for my death. And like another gentleman posted, I wish I would've known then (1994) that I was still going to be around in the year 2006--I would've invested more into my retirement accounts. I am now, and what a wonderful feeling that is.

Yes, we're lucky, and yes we need to remind those who were children during the early days of the pandemic, just how devastating it was. In 1994, I was down to "the danger zone" as far as t-cells go, but I truly believe that optimism, not pessimism, and a whole lot of luck has me writing this reply. NORMAL LIFE EXPECTENCY is totally different verbiage than A NORMAL LIFE. Of course, we'll never live a normal life, but--get your bows-and-arrows ready, I don't know if that is so bad. Normalacy is a fallacy, IMHO. I wouldn't wish this virus on my worst enemy, but it has forced be to confront my own strengths and weaknesses. That in and of itself is probably the most important to thing to come out of being poz for 19 years.

I enjoy the opinions of others and applaud you for your courage as you continue to LIVE. Have a wonderful holiday weekend. Best. LWK

Offline blondbeauty

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Re: Analysis: HIV life expectancy now `normal`
« Reply #69 on: September 02, 2006, 01:07:03 PM »
What is a "normal" life? Living in a plane most of the year? Being away from your relatives and friends most of the time? Xmas, new years eve? Having to work with different people every week?
For me is much more scaring thinking about the years I have to work in the future, and working 14 hours every day than taking some pills and having bloodwork done every four months. It is much worse thinking about the thousands of trays I will have to give and pick up in my life, bending my back, than counting the pills I will ever take.
What I would really like is winning the lottery and spending my time doing what I want instead of wasting my time surrounded by people I donīt care about and that I will never see again while the time I could spend with the ones I love escapes from me to make a living.
My life is sustained by chemistry, but is is also sustained by the wings of plane that can fail anytime. I have to take pills every day but I also have to eat, shave, take a shower, have a place to sleep and earn money to be able to do all of those things. Ordinary things in life are much more scaring for me than HIV.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline spock

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Re: Analysis: HIV life expectancy now `normal`
« Reply #70 on: November 25, 2006, 10:33:51 AM »
Here, Here, Moffie!
 Live a long life! Have undetectable viral loads! The side effects are being reserched into oblivion faster than light! .......We have a normal life span??????
 Maybe we will be ALIVE for a span of years that is considered acceptable, but WE ARE NOT GOING TO LIVE OR HAVE  a  "NORMAL LIFE SPAN" BY ANY MEANS!!!!!!
.......Oh well, let's just go take another pill!!!!!!!!!
Alice's in Wonderland  ALL.

Offline AIDS2HIV

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Re: Analysis: HIV life expectancy now `normal`
« Reply #71 on: November 25, 2006, 11:25:46 AM »
send this thread to the 2.9 million families who lost loved ones to Aids so far this year, and see what they think*
Its the future of Hiv Education, and Resources www.aids2hiv.com      Got Community?

Offline o

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Re: Analysis: HIV life expectancy now `normal`
« Reply #72 on: November 25, 2006, 11:43:22 AM »

Sometimes it is not important how many more years i will live. It is more important that i feel myself OK even if i have all the side effects or illnesses i have to face in the future. That i accept life with all its own "side effects".

And for now, being at the age of 30, i hope that the guy that i am dating will still see me as "normal" when i tell my status. this article generates the danger of people underestimating HIV. On the other hand, when i tell the guy that i believe HIV is something i can deal with, such articles will help. That's the dilemma.

Today, i feel responsible for my own happiness. And for others who are HIV-, they have to be carefull. I am not having sex with anyone anyway.
greets
o
« Last Edit: November 25, 2006, 11:52:22 AM by o »

Offline blondbeauty

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Re: Analysis: HIV life expectancy now `normal`
« Reply #73 on: November 25, 2006, 12:40:30 PM »
I know this is going to create me a few enemies here but it seems that some people like behaving like helpless victims of HIV. Of course, some of you are having very serious trouble and are suffering the unbelievable because of HIV. Some of you have been very close to death and millions have died, lost friends and relatives.
HIV will always be a cause of death. Even if a cure is found. Curable diseases still cause deaths, mainly in the underdeveloped world. The lack of food, clean water, of simple antibiotics...cause the deaths of millions of people around the world. So yes, it is also a matter of money.
But I think people on an effective HAART treatment can have a normal life expectancy.
At the beginning of my diagnosis I thought about the many trips I would have to make to the hospital for the rest of my life to remain healthy. Now I think it is much more horrible thinking about the many trips I will have to make on plane, the millions of dirty trays I will have to pick the rest of my life to earn a living, to pay my mortgage, etc...Life isnīt easy for anybody. The most important thing is to be a good person, be optimistic, enjoy waking up every morning, and being close to the people or pets you love.
If you see yourselves as helpless victims donīt expect the rest of the people to see you "normal."
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline libvet

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Re: Analysis: HIV life expectancy now `normal`
« Reply #74 on: November 25, 2006, 01:08:40 PM »
I know this is going to create me a few enemies here but it seems that some people like behaving like helpless victims of HIV. Of course, some of you are having very serious trouble and are suffering the unbelievable because of HIV. Some of you have been very close to death and millions have died, lost friends and relatives.
HIV will always be a cause of death. Even if a cure is found. Curable diseases still cause deaths, mainly in the underdeveloped world. The lack of food, clean water, of simple antibiotics...cause the deaths of millions of people around the world. So yes, it is also a matter of money.
But I think people on an effective HAART treatment can have a normal life expectancy.


I'm going to have to go with your take on this.  I don't see how anyone could get upset a simple statement of fact:  There is no reason to assume that a diagnosis of HIV is a death sentence anymore.

It's a huge leap to say that the article implied that having HIV is an easy thing or that life is going to be good regardless of HIV.

And having HIV doesn't make us immune to any of the thousands of things that make life miserable or could end it prematurely.    People without HIV get cancer, diabetes, influenza, pneumonia, heart disease, etc.

I'm grateful for the advances made in treating HIV.  They may not be perfect, but I'm alive and doing well.

Maybe someday they will find a cure, but things are not nearly as bleak as they were a decade or so ago for someone diagnosed with HIV and that's a damn good thing no matter how you look at it.

Michael

Offline Lis

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Re: Analysis: HIV life expectancy now `normal`
« Reply #75 on: November 25, 2006, 02:45:54 PM »
Hi...

For me it has become a differant NORMAL...
normal to be on disability
normal to have the runs
normal to have fever
normal to feel too tired to function, and yet do it anyway
normal that my labs will still be in the AIDS range, inspite of medication

I am grateful that those who are doing well  were able to make choices about their health..  That really makes it all worth it!!

CHEERS!!

lisbeth
« Last Edit: November 25, 2006, 02:50:33 PM by Lis »
poz 1986....

Offline o

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Re: Analysis: HIV life expectancy now `normal`
« Reply #76 on: November 25, 2006, 04:49:07 PM »
Hi...

For me it has become a differant NORMAL...
normal to be on disability
normal to have the runs
normal to have fever
normal to feel too tired to function, and yet do it anyway
normal that my labs will still be in the AIDS range, inspite of medication

I am grateful that those who are doing well  were able to make choices about their health..  That really makes it all worth it!!

CHEERS!!

lisbeth


i felt terrible after i read this Liz. sorry.

Offline aupointillimite

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Re: Analysis: HIV life expectancy now `normal`
« Reply #77 on: November 25, 2006, 04:52:18 PM »
There is no reason to assume that a diagnosis of HIV is a death sentence anymore.

You're correct; I think that 10 years ago, when PIs were first made available, it was something, anything to stop the virus, regardless of consequences.  It suddenly wasn't a death sentence anymore... and side effects weren't the important thing, the fact they worked did.

Treatment comes first, quality of life second.  One can't begin improving the quality of a life without first ensuring that there will be a life to improve!

And from what I've read, even the nasty side effects of Kaletra don't compare to liquid Norvir or Crix stones.  People agitated for better meds, and they came out.  Personally, from the horror stories I've heard about the early days of HAART, it seems as though they've come a long way.
Your tastebuds can't repel flavor of this magnitude!

Offline allopathicholistic

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Re: Analysis: HIV life expectancy now `normal`
« Reply #78 on: November 25, 2006, 04:59:15 PM »
Personally, from the horror stories I've heard about the early days of HAART, it seems as though they've come a long way.

I agree. Good attitude

As far as the differing viewpoints, I think I understand most of them.

As far as HIV negative people calling the shots and setting the rules and limitations, it makes me very uneasy. Should more poz citizens run for public office?  ???  ???  I'm a little lost here. Help. Thanks.

Offline RobT

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Re: Analysis: HIV life expectancy now `normal`
« Reply #79 on: November 25, 2006, 05:19:44 PM »
Wud some1 please explain "normal" for me? Is it the quality of life or the expectantcy of it?

"Normal" for me does not contain the following:

Going to the hospital on a consistent basis to either get my blood work done or to visit my doctor
The ongoing "side effects" of HAART treatment
Overall lack of energy being related to medication or just putting up w/ this dreaded virus
The thought of being put on a "payment plan" in order to pay for overly priced medication, hospital/doctor visits, or other HIV related visit
The thought that I cannot do what others take for granted such as eating certain foods, staying up l8, etc...

Although none of these fit into what is defined as "normal" for me, HIV treatment has come very far since when it was first developed. It has extended life and ppl do not have the "HIV" look- whatever that is. It's true that the diagnosis of HIV is not taken as a death sentence anymore, but more and more ppl claim that if they received that diagnosis then all they have to do is take a few pills and it will simply 'go away'. It never goes away.
HIV has given me a newer perspective on life. I have made a few changes, but I doubt I will ever have the same amt of energy that I had b4.


RobT


Current meds: Atripla
VL: undetectable
CD4: 630

Offline northernguy

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Re: Analysis: HIV life expectancy now `normal`
« Reply #80 on: November 25, 2006, 06:52:42 PM »
I know that I do not feel "normal" now, waves of nausea etc.  But I do believe that when I start meds they will prolong my life and during that time there will be better and better meds to deal with HIV and maybe even some sort of cure.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline libvet

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Re: Analysis: HIV life expectancy now `normal`
« Reply #81 on: November 25, 2006, 06:55:05 PM »
Wud some1 please explain "normal" for me? Is it the quality of life or the expectantcy of it?


Normal life expectancy is a term that doesn't speak to quality of life at all.  Nor should it.  They aren't the same issue.

Normal life expectancy is around 77 years.

There is no promise those 77 years will be filled with joy and good health inherent to the statement that those of us who are HIV+ will likely live as long as someone without it.  They could just as easily be filled with poverty, heartache, pain, illness, loss, unhappiness....etc.

This is a good thing.  Death offers only one possibility, whereas life offers all kinds of possibilities. 

I have my "HIV days", too and I certainly empathize with those who don't tolerate the medications we have right now.  But a normal lifespan at least opens the possibility of better tomorrow and better treatments.  Already, we have seem remarkable improvements in dosing and side-effects compared with some of the earilier regimens.   That's the kind of options having a normal life expectancy can have.

Michael

Offline blondbeauty

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Re: Analysis: HIV life expectancy now `normal`
« Reply #82 on: November 25, 2006, 08:41:50 PM »
Normal...spending time in these forums is not normal. That proves HIV changes our lifes and we all agree is not like havig a cold...but here we are and things can only get better. ;)
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline aupointillimite

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Re: Analysis: HIV life expectancy now `normal`
« Reply #83 on: November 25, 2006, 08:45:14 PM »
Normal...spending time in these forums is not normal. That proves HIV changes our lifes and we all agree is not like havig a cold...but here we are and things can only get better. ;)

Hear hear!  Excellent point!
Your tastebuds can't repel flavor of this magnitude!

Offline Longislander

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Re: Analysis: HIV life expectancy now `normal`
« Reply #84 on: November 25, 2006, 11:41:06 PM »
When I first came to terms with being gay, I stopped expecting a 'normal'' life. Nice dream if it pans out.

My stepmother-couldn't have children, was a diabetic most of her adult life, on insulin. Heart attack and bypass (no, she wasn't overweight, and didn't smoke), then breast cancer which she beat, a long tough battle. She resumed her life, as it were, until the bone cancer came. She died at 58 years old. Did she live a 'normal' life?

I now have HIV. I KNOW a 'normal' life is out of reach at this point. A 'normal life expectancy'-perhaps.

It's a good deal if you can get it, but a 'normal' life hasn't been promised to any one.
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Lis

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Re: Analysis: HIV life expectancy now `normal`
« Reply #85 on: November 25, 2006, 11:53:26 PM »
I agree with L.I.   what we get is what we get...  it is how we use what we have left that matters..

and O I'm sorry i bummed you out... but that is just what has been happening for me..
poz 1986....

Offline Mynewlife+

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Re: Analysis: HIV life expectancy now `normal`
« Reply #86 on: November 26, 2006, 03:05:17 AM »
You guys make this to complicated... Just read the last addition on my personal message...  So true..  If anything, I have become stronger, there is no other choice for me... There is no normalcy in this world.. Period.
Share your knowledge, we know too much to waste it.. Share your joy, we all want it... Share your pain, it won't last forever.. Nothing does.
Me

I live in turbulence to rest in peace after

You live you learn
You love you learn
You cry you learn
You lose you learn
You bleed you learn
You scream you learn
ALANIS MORISSETTE

Offline Dealing

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Re: Analysis: HIV life expectancy now `normal`
« Reply #87 on: June 28, 2014, 01:11:34 AM »
OK -- I have to add my 2 cents here.......

First, as others have pointed out, saying one may live a "normal life expectancy" is NOT the same as saying one may live a "normal live" (whatever that is....).  Am I hopeful that I will live at least as long as I would have without this damn virus.....  of course I am -- why would I be doing all I'm doing if I thought it was in vain.  If at some point down the road, I die due to an "AIDS illness", does that mean hiv cut my life short?  Perhaps -- but maybe not.  Let me explain -- Since I found out my status last year, I have made a number of changes to my life.  I eat better, exercise more, get more fiber, try to be aware of stress and do something about it, try to sleep more, floss daily etc.  Without these changes I may have been one of the many men in my family who was destined for an early demise from heart disease.  Of course, I still could die of heart disease, the point is, I didn't know when I was going to die before the virus and I don't know when I will with the virus. 
Today, I try to not get caught up in things I can't control -- I'm not perfect at this, as anyone who read my thread about not yet getting to undetectable can see, but I'm trying far more now than I did a year and 6 days ago, when I still thought I was "negative".  I do not mean to imply anyone is wrong in what has been said here -- indeed, there is a tremendous danger that people are getting a bit jaded about the dangers of hiv and there is a definite possibility that our "drain on the budget" will cause some changes.  We must insure that we keep people aware -- but giving those of us living with hiv some hope that we aren't going to die tomorrow from this virus (remember those early days after your diagnosis......) is not a bad thing in my book.  Is my life "normal" now??  Hell, no....  I hate taking these pills every night, hate having to be sure that I have something to eat with them, if I'm out and about at 9:30 in the evening, hate that I'm still scared to death on the rare occasions that I have sex with my (negative) partner -- no, this is not normal to how I was living a year ago.  It is, however, my "normal" now........ 
OK -- now I can go to work without having these thoughts in my head all day.  Thanks to all who share here -- it is so wonderful to read how others live with this virus and see that my "crazy" thoughts, aren't so crazy (or unique) after all.
Hugs!
Im so glad I ran into this, ive been up all night stressing about my diagnosis, but you just made me realise that we tend to worry too much about our health and how we die after being diagnosed with HIV.
We might die from something completely different, maybe get hit by a bus who knows. I guess its just trying to adjust to the "new normal" as hard as it may be I do hope I will surely get there.

Offline gadawg1979

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Re: Analysis: HIV life expectancy now `normal`
« Reply #88 on: June 28, 2014, 01:36:30 AM »
Analysis: HIV life expectancy now `normal`

http://news.monstersandcritics.com/health/article_1194677.php/Analysis_HIV_life_expectancy_now_`normal`



TORONTO, ON, Canada (UPI) -- A decade ago, when a doctor diagnosed a patient with an infection caused by human immunodeficiency virus (HIV) -- the microbe responsible for AIDS -- that individual faced a bleak and short future.

I wish someone would tell life insurance companies.

The disease was usually advanced, the treatments were limited and a patient`s life expectancy was in the neighborhood of about two years.

'Today, I can tell my patients with HIV that they can have a normal life expectancy,' said Stefano Vella, director of drug research and evaluation at the Institute Superiore di Sanita in Rome, the equivalent of the U.S. National Institutes of Health.

Of course, there are some caveats, Vella told United Press International, the chief one being that the patient has to take the prescribed medicines faithfully; another, that patients have access to treatment.

'We have so many medicines now and they are so good that we know we can keep the virus suppressed for years,' said Vella, a former president of the International AIDS Society, the organization that ran last week`s record-setting International AIDS Conference in Toronto, Canada.

For patients in the United States and in the rest of the world where access to the antiretroviral drugs is available, Vella said that physicians can construct potent lines of long-lasting, well-tolerated treatment.

For example, in 1998, Abbott Laboratories enrolled 100 patients in its initial major study involving the protease inhibitor lopinavir, boosted with a small dose of another protease inhibitor ritonavir. Together, the drug is prescribed as Kaletra.

Of that original group of 100 patients, 61 remain on Kaletra and 59 percent of them have HIV viral loads that cannot be detected in the blood with standard assays eight years after starting on the drug.

When the virus is suppressed to undetectable levels, researchers say, the ability of the microbe to mutate and escape the drug is limited. As long as patients stay on combination therapy that has been the mainstay of treatment since 1996, the virus is thwarted from destroying immune cells and cannot create an immunosuppressed environment from which obscure and deadly AIDS infections can arise.

'We can now have drugs that allow us to construct second, third and even fourth lines of treatment that are all capable of suppressing the virus,' Vella said. 'What`s more, we are going to see even better drugs in just a couple of years.'

'Our new treatment guidelines,' said Scott Hammer, professor of medicine at Columbia University in New York, 'encourage doctors to treat even the most-experienced patients with an eye to suppressing the disease.'

Hammer told UPI that these patients -- subjects who have been treated with drugs since the earliest days of the AIDS epidemic -- often have virus species that have developed mutations that make many of the treatment options unusable.

However, two of the newer protease inhibitors, tripanivir and darunavir, were specifically designed to overcome the virus that have developed resistance to other antiretrovirals, he said.

Vella pointed to the impressive debut of investigational integrase inhibitors, a new class of drugs that attack an enzyme required by the virus to replicate. The integrase inhibitor MK-0518 worked as effectively as the best treatment available for individuals who have not previously received antiretroviral therapy. What`s more, MK-0518 worked significantly faster in lowering virus in the blood.

The ability to hold the virus at bay for years now has doctors looking far forward in treating patients because 70 percent of patients infected with HIV will die of something other than AIDS, said Eric Daar, chief of HIV medicine at Harbor-UCLA Medical Center in Los Angeles.

Instead of just focusing on HIV levels, he said during a symposium at the conference, doctors have to tailor the medicine to the patient since 9 percent of HIV patients are now dying from heart disease. Another 15 percent die from liver disease and 8 percent die from cancer.

But with the number of drugs available, 25 are being marketed currently, Daar said clinicians can find potent combinations that suppress the virus and do not raise cholesterol or liver enzymes.

'We know the benefits of antiretrovirals far outweigh the risk of heart disease,' Daar said. And he said that before getting too worried about what regimen to use to protect specific organs, doctors would be wise to have HIV patients get other risk factors under control -- including cessation of smoking.

'HIV is a chronic disease,' Vella said. 'If patients stay on their medicines, they will live a normal lifetime.'

Adherence or compliance with the regimens - one of which has now been simplified to one pill once a day - has been a problem in the past because of numbers of pills required and because all drugs have adverse side effects.

Doctors and patients have been seeking drug treatments that lessen the number of drugs involved in these regimens in experimental programs.

'These regimens may look good,' said Mark Wainberg, director of the McGill University AIDS Research Center, 'but they are not ready for prime time.'

 :)
Diagnosed March 2012
Initial CD4- 156 VL 200K (started Complera) Genotype test no resistance
First labs on meds CD4- 246 VL 2K Taken after 30 days on Complera
90 Day labs VL 306 No CD4 Drawn
8/21/2012 CD4 474 VL Undetectable (40) %20.6
11/27/2012 CD 4 522 VL Undetectable (40)
2/14/2013 CD 4 464 VL Undetecable (30) 19.6%
6/8/3013 CD 4 528 VL Undetectable (30)
9/24/2013 CD 4 546 VL Undetectable (40)
1/30/2014 CD4 560 VL Undetectable (40) 22 %
6/19/2014 CD4 584 Vl Undetecable (30)

Offline elf

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Re: Analysis: HIV life expectancy now `normal`
« Reply #89 on: June 28, 2014, 09:00:51 PM »
what about ''rapid aging'' and ''inflammation''?   :o
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Offline Buckmark

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Re: Analysis: HIV life expectancy now `normal`
« Reply #90 on: June 28, 2014, 09:34:01 PM »
This thread is from back in 2006, almost 8 years ago.  Talk about resurrecting a zombie.  I state this because many of the original participants likely aren't around any longer to respond to you.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline Dealing

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Re: Analysis: HIV life expectancy now `normal`
« Reply #91 on: June 29, 2014, 03:05:08 AM »
Hi.
I did notice that it was a very old one but I just had to reply as that specific comment lifted my spirits somehow.

Im sad to hear that the rest of the the participants are no longer around, ironic for an article that talks about life expectancy :-\

Offline Miss Philicia

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Re: Analysis: HIV life expectancy now `normal`
« Reply #92 on: June 29, 2014, 07:08:39 AM »

Im sad to hear that the rest of the the participants are no longer around, ironic for an article that talks about life expectancy :-\

Nobody said they were dead. They've just gone on to do other things with their lives than sit around on a web forum.

edit: there are a couple people that have passed away; not unusual
« Last Edit: June 29, 2014, 07:20:51 AM by Miss Philicia »
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Offline Almost2late

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Re: Analysis: HIV life expectancy now `normal`
« Reply #93 on: June 29, 2014, 08:58:44 AM »
Once my numbers improve and I'm feeling better, I plan to live life to the fullest and not worry about life expectancy  ;) I just want to expect to be happy
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

ďI have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!Ē
― Dr. Seuss

ďEverybody dies Ö The thing is, to have a life before we die.Ē
― John Irving, The World According to Garp

Offline bocker3

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Re: Analysis: HIV life expectancy now `normal`
« Reply #94 on: June 29, 2014, 10:32:19 AM »
Hi.
I did notice that it was a very old one but I just had to reply as that specific comment lifted my spirits somehow.

Im sad to hear that the rest of the the participants are no longer around, ironic for an article that talks about life expectancy :-\

Well, I am still around and am glad that I was able to lift your spirits -- even if it took 8 years  ;)

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Dealing

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Re: Analysis: HIV life expectancy now `normal`
« Reply #95 on: June 30, 2014, 12:54:00 AM »
Mis P:Oh alryt I just assumed the latter thamks for clarifying that. And you absolutely right people die, but with my current diagnosis I seem to fret alot when someone positive dies as it shows me that journey awaits me aswell, mine probably sooner than others.

Almost2Late :Thats a great approach to it, I wish I had your spirits.

Bocker3:Thanks again :-)

Offline Miss Philicia

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Re: Analysis: HIV life expectancy now `normal`
« Reply #96 on: June 30, 2014, 12:01:35 PM »
but with my current diagnosis I seem to fret alot when someone positive dies as it shows me that journey awaits me aswell, mine probably sooner than others.

People I know, and there are more than a handful, that have "died from HIV" didn't really die because their virus exploded -- it was more things like depression leading to drug use resulting in an overdose, or bi-polar situation and their meds stopped working and they tried suicide, botched it, then a blood clot cause a stroke, or they had Chrohn's disease on top of their HIV and that did them in, etc. Or they had severe depression and halted their HIV medications but kept telling their doctors and friends they were taking them. I could go on. I know at least 6 people locally, all long-term survivors, that have left us due to some variant on suicide. For some reason the HIV+ press feels little need to discuss this in their HIV-as-manageable disease front page stories.

So what does that tell you? -- I'd pay more attention on your mental health that worrying about HIV meds failing suddenly -- doesn't really happen.

Other things contributing greatly to HIV death rates in the US are people being diagnosed when their disease has progressed to a cd4 count of "2" and it's just too late to effectively treat. This is a simple result of at-risk people thinking they are not at risk and not getting tested for HIV regularly.

Anyway, if you don't fall into those situations I outlined you should try and relax about the death issue. You are more likely to be run over by a taxi crossing the street.
« Last Edit: June 30, 2014, 12:03:59 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Almost2late

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Re: Analysis: HIV life expectancy now `normal`
« Reply #97 on: June 30, 2014, 01:45:48 PM »
Miss P, I've learned so much from you in these threads on hiv, Yours and several folks here have helped me pull through to where I am today.

Keeping a "POSITIVE" attitude was probably the most important lesson I've learned, even with low cd4's.. My attitude is "FUCK YOU AIDS I"M GONNA BEAT YOU"


Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

ďI have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!Ē
― Dr. Seuss

ďEverybody dies Ö The thing is, to have a life before we die.Ē
― John Irving, The World According to Garp

Offline Miss Philicia

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Re: Analysis: HIV life expectancy now `normal`
« Reply #98 on: June 30, 2014, 02:14:38 PM »
Miss P, I've learned so much from you in these threads on hiv, Yours and several folks here have helped me pull through to where I am today.

Keeping a "POSITIVE" attitude was probably the most important lesson I've learned, even with low cd4's.. My attitude is "FUCK YOU AIDS I"M GONNA BEAT YOU"




I started off with low cd4s 21 years ago and have had +1,000 consistently for the past six years or so. But I would be just as happy with 500, anything above that is just some extra icing and doesn't make much difference. Today's treatments are very effective and, over time, your numbers will improve. Just be patient, and I always recommend focusing more energy on eating well, sleeping well (VERY important in my book) and being on guard for depression. The best thing for depression is to not feel alone with your diagnosis by being open to as many people as you find prudent -- close friends and family members make all the difference. Every time I go to the doctor I call my 79 year old mother and let her know how it goes -- she's a breast cancer survivor so she's very empathetic to what I go through in life.
"Iíve slept with enough men to know that Iím not gay"

 


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