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Author Topic: Is it wrong to think how long do I have left?  (Read 2089 times)

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Offline RemyG1971

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  • E ho'a'o no i pau kuhihewa Try it to end the panic
Is it wrong to think how long do I have left?
« on: July 16, 2012, 11:51:23 AM »
I am just about a year into testing  positive. I have asked my Doctor based on my numbers how long  till things progress and of course they will not answer me, is it wrong to think like this or is this normal?

Offline Miss Philicia

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Re: Is it wrong to think how long do I have left?
« Reply #1 on: July 16, 2012, 12:22:56 PM »
As long as you're on HIV medications there is no reason to think of impending death. If you're not on them now, you will be at some point, so what I just wrote would still apply. You can live to a ripe old age and enjoy wearing adult diapers in a nursing home just like everyone else. Or having degenerative Alzheimers.

However, if you choose not to go on the medications when your numbers indicate you should then yes, you'll eventually be six feet under.
"Iíve slept with enough men to know that Iím not gay"

Offline Rockin

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Re: Is it wrong to think how long do I have left?
« Reply #2 on: July 16, 2012, 01:49:49 PM »
As long as you're on HIV medications there is no reason to think of impending death. If you're not on them now, you will be at some point, so what I just wrote would still apply. You can live to a ripe old age and enjoy wearing adult diapers in a nursing home just like everyone else. Or having degenerative Alzheimers.

However, if you choose not to go on the medications when your numbers indicate you should then yes, you'll eventually be six feet under.

Here here. Stop the negativity people, we might live long enough to actually complain about how being old sucks.

Offline Common_ground

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Re: Is it wrong to think how long do I have left?
« Reply #3 on: July 16, 2012, 02:44:26 PM »
I think you shouldnt dwell on dying of AIDS per se but as studies have shown in recent years those of us living with HIV is at greater risk of developing diseases leading to premature death.

We are more prone to certain cancers, cardiac arrest, liver and kidney failure to name a few. HIV also turns out really nasty in some people while others only have minor complications.

Use this knowledge to live every day to its fullest!

Know your virus, keep asking questions, read and study,eventually you will come to a point were youre fed up on information and hopefully find acceptance in that there is no true answer to your question.
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline emeraldize

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Re: Is it wrong to think how long do I have left?
« Reply #4 on: July 16, 2012, 03:00:15 PM »
Hey Remy,

I thought about how long I'd be around long before being diagnosed with HIV.

I know it's slightly different in the face of a chronic disease---but I started thinking about it at a young age and I think many others do, too.

I know now it's a crapshoot, with or without disease.

Emy

Offline spacebarsux

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Re: Is it wrong to think how long do I have left?
« Reply #5 on: July 16, 2012, 03:05:26 PM »
I am just about a year into testing  positive. I have asked my Doctor based on my numbers how long  till things progress and of course they will not answer me, is it wrong to think like this or is this normal?

It's normal, as in it is natural to think like this in the months soon after diagnosis. I certainly did.

Just don't let it consume you. Because: overthinking something makes squat difference to real life happenings. And more importantly, given the current treatment options (and those in the forseeable future) we're estimated to have a relatively 'normal' life expectancy, subject to multiple variables of course.

Lastly, would you dwell on your time left had you not pozzed up? If not, then there's no reason to now. No one know how long they have left, regardless of HIV.

Best
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Miss Philicia

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Re: Is it wrong to think how long do I have left?
« Reply #6 on: July 16, 2012, 03:09:21 PM »
I think people look at this topic incorrectly in the first place. With modern treatment we do still see death from HIV, but it's largely contained to patients who presented a diagnosis with advanced AIDS (i.e. sigle digit cd4 counts and multiple OIs), and patients with adherence issues due to multiple causes such as concurrent mental health issues and/or substance abuse issues, etc.

However, being on HIV treatment the rest of your life doesn't in anyway preclude you from developing some other atrocious chronic condition that you'll croak from, something that you may have gotten even if you'd been HIV-negative. These deaths, I assume, are not ever included in proper AIDS death stats. Nor is it when you freak out and commit suicide.
"Iíve slept with enough men to know that Iím not gay"

Offline Common_ground

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Re: Is it wrong to think how long do I have left?
« Reply #7 on: July 16, 2012, 03:51:51 PM »
Nowadays I think the "AIDS-related deaths", whatever that means, accounts for about 1/3 of the total causes of deaths among people diagnosed with HIV. (Sorry for no reference, but I think the number is somewhat correct)

Im just guessing that most people in this group is, as you mention P, advanced stage, poor adherence and some nut jobs. However, people with HIV do die prematurely and then looking at the stats most deaths are from other causes which is referred to as normal death causes by aging for example organ failure.

Do we actually have any living proof of a human living with HIV 30 or 35 +?

Just take a look at how the life expectancy is calculated in most studies and youll be in for a ride. Im not a doctor or a scientist but I took Math and Statistics 101 and I aint buying it. Im still rollin on thou, determine to live it up in style  ;D



2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline Rockin

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Re: Is it wrong to think how long do I have left?
« Reply #8 on: July 16, 2012, 04:07:36 PM »
Nowadays I think the "AIDS-related deaths", whatever that means, accounts for about 1/3 of the total causes of deaths among people diagnosed with HIV. (Sorry for no reference, but I think the number is somewhat correct)

Im just guessing that most people in this group is, as you mention P, advanced stage, poor adherence and some nut jobs. However, people with HIV do die prematurely and then looking at the stats most deaths are from other causes which is referred to as normal death causes by aging for example organ failure.

Do we actually have any living proof of a human living with HIV 30 or 35 +?

Just take a look at how the life expectancy is calculated in most studies and youll be in for a ride. Im not a doctor or a scientist but I took Math and Statistics 101 and I aint buying it. Im still rollin on thou, determine to live it up in style  ;D

Common I think its somewhat irresponsible to write stuff like "people with HIV do die prematurely". Because of what, because of the medication? It depends on so many factors that I think you have to be extremely careful when writing stuff like that. If someone who's poz dies everyone automatically assumes that it was because of HIV and people can die due to a number of reasons.

Does every poz person out there who died from a kidney infection died because of the medicine? How can we know for sure?
« Last Edit: July 16, 2012, 04:16:36 PM by Rockin »

Offline Miss Philicia

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Re: Is it wrong to think how long do I have left?
« Reply #9 on: July 16, 2012, 04:14:27 PM »
and some nut jobs.

You know, as someone who just lost his best friend to having mental health issues and suicide, I really resent you using this language. He was not a nut job, in fact he was about the smartest guy I have ever met. Skipped two years of school as a kid, etc.

However, a month before this happened his meds for whatever condition he had (bipolar maybe, not sure the exact diagnosed) stopped working suddenly and whatever happened when they tried to transition him to another regimen obviously didn't happen quick enough.

Not that I need to explain the details to you, but hopefully you won't find yourself in similar shoes one day. Seriously, your comment was lame.

I took Math and Statistics 101

How utterly impressive.
« Last Edit: July 16, 2012, 04:16:40 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Rockin

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Re: Is it wrong to think how long do I have left?
« Reply #10 on: July 16, 2012, 04:19:00 PM »
You know, as someone who just lost his best friend to having mental health issues and suicide, I really resent you using this language. He was not a nut job, in fact he was about the smartest guy I have ever met. Skipped two years of school as a kid, etc.

However, a month before this happened his meds for whatever condition he had (bipolar maybe, not sure the exact diagnosed) stopped working suddenly and whatever happened when they tried to transition him to another regimen obviously didn't happen quick enough.

Not that I need to explain the details to you, but hopefully you won't find yourself in similar shoes one day. Seriously, your comment was lame.

How utterly impressive.

I agree, people who suffer from mental health sometimes cannot do anything about it. Just read the thread from rigger, who threw all of his medication out during a psychosis-induced impulse and is now going through hell in an hospital.

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: Is it wrong to think how long do I have left?
« Reply #11 on: July 16, 2012, 04:24:19 PM »


Im just guessing that most people in this group is, as you mention P, advanced stage, poor adherence and some nut jobs. However, people with HIV do die prematurely and then looking at the stats most deaths are from other causes which is referred to as normal death causes by aging for example organ failure.

Do we actually have any living proof of a human living with HIV 30 or 35 +?



Um, let's investigate this post.

There is also access to meds, which is even a problem in the US of M'effin A.

There is a health care system that often lets people slip through the cracks, particularly if they are not intelligent or motivated enough to aggressively seek out and participate in their own care. These aren't "nut jobs."

There's also a genetic roll of the dice associated with HIV infection. Some folks seem to take longer to progress - some don't progress at all. And some are on the other side of that outlier - they progress quickly despite their best efforts. Several recently dead members here fit squarely into that category.

What you can do, is take your meds, work with your doctor, educate YOURSELF about HIV infection - perhaps to the point where guessing at important stats like the rate of AIDS-related deaths among HIV infected people is supplanted by doing just the tiny bit of scientific research necessary to form an educated opinion.

And as far as 30 plus years of followup - you DO realize that there won't be such a thing for, say, Atripla or Isentress for quite some time? The drugs are very new. But they seem to be able to stop HIV dead in it's tracks - and for newly diagnosed people in pasrticular, that's great news.

Because it's not like scientific research has stopped.

I myself am signed up for a trial which will introduce a new drug (sadly, the delivery system is still in=office infusion) to be taken once a month or thereabouts, once my viral load has remained UD for a year or three. Oh, and this new treatment will allow me to go off my traditional med therapy, perhaps for a year and a half at a time.

Thing is, you can, of course, think about all the time you will have left. But unless you are keeping up with the latest trends and studies and breakthroughs, what you will be REALLY doing is wasting, and souring, the time you have right now.

Which seems not so much fun.

"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 Miss Philicia

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Re: Is it wrong to think how long do I have left?
« Reply #12 on: July 16, 2012, 04:24:46 PM »
I agree, people who suffer from mental health sometimes cannot do anything about it. Just read the thread from rigger, who threw all of his medication out during a psychosis-induced impulse and is now going through hell in an hospital.

Alas, most people assuredly aren't in therapy either. Think of things like this (and bear in mind this is the UK where they don't even have the added stress of the US health system). And I'm sure most of these people at one time though "Oh, I'd never do something like that..."
"Iíve slept with enough men to know that Iím not gay"

Online Joe K

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Re: Is it wrong to think how long do I have left?
« Reply #13 on: July 16, 2012, 04:28:23 PM »
Nowadays I think the "AIDS-related deaths", whatever that means, accounts for about 1/3 of the total causes of deaths among people diagnosed with HIV. (Sorry for no reference, but I think the number is somewhat correct)

Im just guessing that most people in this group is, as you mention P, advanced stage, poor adherence and some nut jobs. However, people with HIV do die prematurely and then looking at the stats most deaths are from other causes which is referred to as normal death causes by aging for example organ failure.

Do we actually have any living proof of a human living with HIV 30 or 35 +?

Just take a look at how the life expectancy is calculated in most studies and youll be in for a ride. Im not a doctor or a scientist but I took Math and Statistics 101 and I aint buying it. Im still rollin on thou, determine to live it up in style  ;D

You might want to tone down the definitive statements, because you don't know what you are talking about.  I've been poz for 27 years, which is damn close to 30 and there is no reason I won't live another 20+ years.  Last time I checked, I don't have an expiration date and I don't live my life based on what others are saying should happen.  Spend your time living your life and let your personal experience be your guide.

Finally, please don't ever refer to anyone, who suffers from mental illness, as "nut jobs", as that is demeaning and dehumanizing to those of us who fight it every day.  Be grateful that you do not suffer from it and stop looking down on those of us who do.

Joe

Offline Common_ground

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Re: Is it wrong to think how long do I have left?
« Reply #14 on: July 16, 2012, 04:48:25 PM »
Sorry for my previous post. My bad. 
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline Rockin

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Re: Is it wrong to think how long do I have left?
« Reply #15 on: July 16, 2012, 04:57:51 PM »
You might want to tone down the definitive statements, because you don't know what you are talking about.  I've been poz for 27 years, which is damn close to 30 and there is no reason I won't live another 20+ years.  Last time I checked, I don't have an expiration date and I don't live my life based on what others are saying should happen.

Joe I wish I could read posts like yours everyday  :D

Offline bocker3

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Re: Is it wrong to think how long do I have left?
« Reply #16 on: July 16, 2012, 10:15:25 PM »
While it is natural and normal to "wonder" about time left after getting a serious diagnosis -- it is, as others have said, ultimately a waste of time.  There are many HIV-negative people who will drop dead unexpectedly tomorrow -- through natural causes or unnatural causes.  Death is inevitable for us all, so stop worrying about when and enjoy today.
There was an old saying I learned in AA -- if you keep one foot planted in yesterday, worrying about what already happened, and keep your other foot planted in tomorrow worrying about what may be, you are pissing all over today!

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 wolfter

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Re: Is it wrong to think how long do I have left?
« Reply #17 on: July 17, 2012, 10:45:20 AM »


Do we actually have any living proof of a human living with HIV 30 or 35 +?



If I'm still posting in 4 years, that'll be personal proof.  I know of people diagnosed in the early 80's still living.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

 


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