Author Topic: Doc, how long will i live? (for the newly diagnosed) (Read 24086 times)

zeb · « **on:** March 24, 2007, 04:55:40 pm »

Hey you all,

As a reaction to the Gallant interview i wonder how your docs regard the manageability of this infection.
Some quotes from your doc added would be fine reading material.

Take care,
Zeb

Ihavehope · « **Reply #1 on:** March 24, 2007, 05:46:41 pm »

my doc said normal life span minues 6 months or a 1 year, if i take care of myself, no Hep C, take my meds and good liver function.

Miss Philicia · « **Reply #2 on:** March 24, 2007, 06:01:42 pm »

I've never asked as the answer would have changed too much since the time I was diagnosed.

budndallastx · « **Reply #3 on:** March 24, 2007, 07:40:36 pm »

Last year as m t-cells reached the 200 mark, I met my new doc. He told me it was a chronic condition but that with proper care and good adherence I should be able to live a normal lifespan. He has been treating HIV patients for over 10 years and has seen so many improvements in the drugs that he is hopeful.

Of course hope is not a cure, it does provide one the strength to continue on and live instead of sitting back waiting.

milker · « **Reply #4 on:** March 24, 2007, 09:56:32 pm »

I'll ask when I'm in the hospital with IVs all over my body.

Until then, I expect to annoy people for a very long time.

Milker.

otherplaces · « **Reply #5 on:** March 24, 2007, 10:27:30 pm »

The first thing my doc said was, "Brian, you're going to live to be an old man". He's been treating HIV for 15 years. I go back and forth on whether or not I believe that, but I do believe I'm not going anywhere anytime soon.

best,
brian

Buckmark · « **Reply #6 on:** March 25, 2007, 09:54:38 am »

I think I know what you mean from the title of your post -- asking your how long can you expect to live with HIV and not succumb to some HIV-related disease. Certainly your doctor should / will =give you the benefit of his experience from treating folks with HIV. But I'd just like to remind you that your doc does not have all the answers. Part of it is up to you, insofar as living a healthy lifestyle. And part of it is up to chance / luck / divine intervention.

Regards,

Henry

zeb · « **Reply #7 on:** March 25, 2007, 10:03:41 am »

Henry,

Thank you for your post. As far as i'm looking at it: devine intervention is part of life regardless hiv.
And i totally agree that a healthy lifestyle is all in the game when you want to enjoy your golden years.

take care,
Zeb

Life · « **Reply #8 on:** March 25, 2007, 10:50:43 am »

"Eric, live your dreams, your going to around for them" - Dr. Ben

aupointillimite · « **Reply #9 on:** March 25, 2007, 05:20:21 pm »

I actually didn't ask my doc that... there seem to be too many variables... nor does it concern me all that much.

It would be bleak to have four more decades of boringness... but I'd like to be able to say I lived in whatever time I have.

bear60 · « **Reply #10 on:** March 25, 2007, 05:35:41 pm »

quote Benj: "I actually didn't ask my doc that... there seem to be too many variables... nor does it concern me all that much."
.......................
Frankly I am glad that I never believed what the doctors were telling us back in the 80's. That an HIV positive person had 2 to 10 years to live.
The information about longevity of course has changed now. I suppose that doctors are trying to "do the right thing" but I would not accept as absolute fact whatever statistics are quoted. Because you know tomorrow they will change.
On a bright note, however, the statistics seem to be moving towards a longer life expectancy.

aupointillimite · « **Reply #11 on:** March 25, 2007, 05:38:27 pm »

Quote from: bear60 on March 25, 2007, 05:35:41 pm

On a bright note, however, the statistics seem to be moving towards a longer life expectancy.

It's not a bright note for me... I was looking forward to running up some awesome credit card debt and then dying before having to deal with it.

Thanks a lot, HAART....

Ihavehope · « **Reply #12 on:** March 25, 2007, 05:43:28 pm »

Wouldn't it be odd, if we outlive all our HIV neg friends in our same age group. I think I would Gag.

zeb · « **Reply #13 on:** March 26, 2007, 08:06:34 am »

some quote, source: thebody.com:

You wont die of Aids.
Jun 9, 2006

I found this article in a Spanish National Newspaper. I enclose the link and the translation. The author is the Santiago Moreno, head of the Infectious Diseases department of the Ramon y Cajal Hospital in Madrid. Maybe this could help other readers. Link: http://www.elmundo.es/suplementos/salud/2006/666/1149184806.html And here is the translation:

OPINION "You no longer die of AIDS" BROWN SANTIAGO. Writing about positive aspects of the epidemic in the early years or even a few years ago was hard and difficult.today, describing my personal feelings about the most significant changes in terms of the clinical aspects in the first twenty five years of the history of AIDS has become a much easier task worth sharing.

the spectacular improvements in treatment options,life expectancy and quality of life ( for the majority of infected people in our society ) (= spaniards) are now commonly known.But perhaps we don't stop to think about the immediate repercussions of this: the virtual normalisation of the lives of those affected:- a full social and family life,work, long term personal projects, all of this was not possible before but is now the norm.

to be able to share this information means that a new diagnosis is not now a traumatic experience . patients know of the changes and in spite of the problems that we still have to solve which can affect them negatively, they have a distinctly different attitude to their situation and future prospects.

As medical staff we now have a lot of experience, lessons learned and a lot of useful tools to use both now and in the future to come which enable us to say to the majority of our patients " you won't die of aids now" Brown Santiago is head of Infectious Diseases of the Hospital Ramon and Cajal of Madrid.

Response from Dr. Young

Thanks for the link.

Santiago is a very thoughtful doctor; I've been fortunate to have met him on occasion and agree with his quote.

BY

woodshere · « **Reply #14 on:** March 26, 2007, 11:46:13 am »

Once again, another post about how long we are expected to live. Did I miss something like "presto we are cured and will live forever" or "oops, we're wrong HAART is failing and you are going to die in 1 year", because I think it is pretty much the same as the thread from a few weeks ago. (which by the way probably had many of the same participants)

I asked the basic question of my doctor to which he responded, "Well how long were you expecting to live prior to being HIV+?" I said that I actually had passed it. He said, "That's great, this is all bonus time." And that was pretty much it.

I focus on what I am supposed to do to live. Take my meds, be proactive in my healthcare, ask questions-get answers, improve diet, exercise, etc. I do all I can to live my life, the rest is out of my hands. I might die when I am 90 or possibly I could get hit by a bus when I leave work today.

I live as long as I live,
Woods

ACinKC · « **Reply #15 on:** March 26, 2007, 12:01:28 pm »

Andrew: Doc, how long will i live?
Doc: You shall live until the day you die!
Andrew: Ahhhh sarcasm, thats my native language. You have passed the test and are deemed worthy to treat the almighty one!
Doc: Who said I wanted to.

I love my Dr.

Esquare · « **Reply #16 on:** March 26, 2007, 10:43:24 pm »

Quote from: Ihavehope on March 25, 2007, 05:43:28 pm

Wouldn't it be odd, if we outlive all our HIV neg friends in our same age group. I think I would Gag.

Well we certainly are more aware of everything going on inside or body than the negative person is so that is possible.

zeb · « **Reply #17 on:** March 28, 2007, 01:29:03 pm »

at this moment (march 29th) more than half of our (voters) docs believe we will have a normal lifespan...

Are they sugar coating it? Or are they trully convinced?

Zeb

bear60 · « **Reply #18 on:** March 28, 2007, 03:12:29 pm »

Zeb..Today is the 28th of March. You are ahead of us in another dimension or something?

Ihavehope · « **Reply #19 on:** March 28, 2007, 03:22:53 pm »

Maybe Zeb lives in Japan.

zeb · « **Reply #20 on:** March 28, 2007, 03:24:43 pm »

Sorry Bear,

Even though i live in Europe it still is the 28th.

Zeb

bear60 · « **Reply #21 on:** March 28, 2007, 03:28:01 pm »

I do that all the time Zeb. Since I am self employed, the days tend to run into each other and I find myself asking what day it is. If I am working hard, I do enjoy the weekends and some time to myself, though.

thunter34 · « **Reply #22 on:** March 28, 2007, 03:51:36 pm »

Oh, Lordy! It's that article that blondbeauty posted up here some time back.

" the virtual normalisation of the lives of those affected:- a full social and family life,work, long term personal projects, all of this was not possible before but is now the norm. to be able to share this information means that a new diagnosis is not now a traumatic experience ."

What planet does that guy come from?

...Never mind. I think I know.

[attachment deleted by admin]

zeb · « **Reply #23 on:** March 28, 2007, 04:06:13 pm »

Quote

not now a traumatic experience

Well that was not my experience

Zeb

aupointillimite · « **Reply #24 on:** March 28, 2007, 04:06:30 pm »

What happens in Bizarro World stays in Bizarro World.

racingmind · « **Reply #25 on:** March 28, 2007, 04:18:11 pm »

Good God, here we go again.....

To be perfectly honest, I would be too embarrassed to ask my doctor such a dumb question.

No one, I mean NO ONE (including your doctor), can predict how long you will live. Anyone with a rudimentary knowledge of HIV knows that it is of an unpredictable nature. ANYTHING can happen.

Just learn how to take better care of yourself, adhere to your meds, have fun, and make plans for the future!

zeb · « **Reply #26 on:** March 29, 2007, 06:27:06 am »

yes racing,

the nature of life is unpredictble. Nevertheless I think this issue will always be like the virus itself: persistent.

Zeb

Moffie65 · « **Reply #27 on:** March 29, 2007, 07:08:17 am »

Quote from: zeb on March 25, 2007, 10:03:41 am

And i totally agree that a healthy lifestyle is all in the game when you want to enjoy your golden years.

Zeb,

Trust me, HIV can tarnish even the richest gold...........

Love,

zeb · « **Reply #28 on:** March 29, 2007, 07:31:48 am »

Tim,

I know, HIV has tarnished my life already.
I just have some stuff to here on this place: like taking good care of my kids and giving them all my love.

With current treatment care hiv is not reduced to just some flu and popping some pills. Life has changed forever.

Zeb

northernguy · « **Reply #29 on:** March 29, 2007, 09:30:21 pm »

Funny, I honestly don't think I've ever asked my doc that. A million other questions, but not that.

koi1 · « **Reply #30 on:** April 01, 2007, 07:30:10 pm »

Enough of this hit by a bus shit. How about getting run over by a camel, or choking on dick? Let's be more creative. For example, "I'll live to be a hundred unless, a dominican disemabowels me with his....

rob (who has never had dominican, nor a donkey in Tijuana.)

koi1 · « **Reply #31 on:** April 01, 2007, 07:32:56 pm »

Moffie,

I hope you never volunteer at suicide prevention hotline.

Just sayin'

rob ( who believes that even a shitstorm can bring kernels of golden corn)

Life · « **Reply #32 on:** April 01, 2007, 09:35:33 pm »

http://www.youtube.com/watch?v=g540RVvda0o

Monty knows....

northernguy · « **Reply #33 on:** April 01, 2007, 11:05:12 pm »

Quote from: koi1 on April 01, 2007, 07:30:10 pm

Enough of this hit by a bus shit. How about getting ....choking on dick? ...

Oh lord, just imagine your family trying to explain that to the relatives. At least they could trot out the old cliche "at least he died doing something he loved".

koi1 · « **Reply #34 on:** April 02, 2007, 09:35:48 am »

Quote from: northernguy on April 01, 2007, 11:05:12 pm

Oh lord, just imagine your family trying to explain that to the relatives. At least they could trot out the old cliche "at least he died doing something he loved".

That is way too funny. It would become the family's dirtiest secret, except for the time I hit on my really hot cousin from Tijuana. How we laghed.

rob

Ihavehope · « **Reply #35 on:** April 02, 2007, 10:28:36 am »

Quote from: koi1 on April 02, 2007, 09:35:48 am

That is way too funny. It would become the family's dirtiest secret, except for the time I hit on my really hot cousin from Tijuana. How we laghed.

rob

Only a true slut would want to flirt and sleep with her cousin..

That's my Koi,

wouldn't change her for a box of chocolates.

Al

aupointillimite · « **Reply #36 on:** April 02, 2007, 11:12:39 am »

I'm with koi... I am so sick of this "hit by a bus" shit.

I know that people getting hit by buses is a problem of epidemic proportions, there are other ways to die, you know.

Like... What if I'm a total idiot and use a hairdryer in the shower? Or accidental antifreeze poisoning? Or death by baboon attack? Or a nuclear power plant goes all China Syndrome and your neighborhood turns into a giant plutonium fondue?

I think we're really selling ourselves short by assuming that buses are the only danger to human life. We're also doing a disservice to the most popular mode of public transportation in the world. Poor buses.

pozinbama · « **Reply #37 on:** April 02, 2007, 11:14:57 am »

The you aren't going to die speech from my doc is what made me break down and cry in his office. I hadn't really thought about dying until he told me that I wasn't going to....But he does believe in the manageability of it, and thinks I started treatment at the right time that I will live a "normal" life span. Of course only time will tell.

milker · « **Reply #38 on:** April 02, 2007, 11:59:59 am »

It happens!

Milker.

pozinbama · « **Reply #39 on:** April 02, 2007, 12:05:01 pm »

I saw somebody get pulled out from underneath a bus once. It does happen....

aupointillimite · « **Reply #40 on:** April 02, 2007, 12:28:32 pm »

Quote from: pozinbama on April 02, 2007, 12:05:01 pm

I saw somebody get pulled out from underneath a bus once. It does happen....

I saw someone get mauled by a pack of roving baboons. It was horrible.

Wait... no, I didn't. I totally made that up.

Central79 · « **Reply #41 on:** April 02, 2007, 01:07:06 pm »

Fucking buses... I remember seeing a red double decker full of policemen in fluorescent vests on Oxford Street, simulating the breaking time of a bus that had killed somebody. As a society we invest a lot in proverbial buses.

I have been hit by a bus, and lived to tell the tale. Perhaps I am now immortal? I should get a robe made and... ooh... ooh! be worshipped like some sort of God!

Anyway - my contribution to this thread is my favourite Danish study. A 25 yo infected today can expect to live about 40 years on current therapy (and I'm sure something better will come along in the next 40 years). That's about 11 years less than his HIV -ve counterpart. Statistically...

Personally, I think with the increased vigilence we pay to our health compared with neggies, that maybe that gap will could be narrowed further.

SASA39 · « **Reply #42 on:** April 02, 2007, 02:10:11 pm »

In Reply to: Antonio Gaudi - Great Buildings Online

posted by andrea eastman on May 17, 1999 at 15:55:43:

Sadly Mr. Gaudi died in Barcelona, Spain, in 1926, though his spirit lives on through his widely loved creations.

"As he was walking to Mass on 7 June 1926, a trolley car struck him. He was poorly dressed, and no one recognized him, so he was taken to a pauper's ward at the Hospital de Santa Cruz, where friends found him. He never regained consciousness, and died three days later. News of his death was received as a local calamity, and his funeral procession was almost a kilometer long..."

-- Sergio L. Sanabria, in the "International Dictionary of Architects", Randall J. van Vynckt, editor, St. James Press 19

aupointillimite · « **Reply #43 on:** April 02, 2007, 05:14:44 pm »

I love love love love love Gaudi's work!

There's nothing so wonderful as a beautiful building.

SASA39 · « **Reply #44 on:** April 03, 2007, 06:17:15 am »

http://www.thebody.com/Forums/AIDS/Meds/Q181778.html

zeb · « **Reply #45 on:** April 03, 2007, 02:49:23 pm »

I've had it with public transport.
(damn comparision)

Zeb

StrongGuy · « **Reply #46 on:** April 03, 2007, 05:41:39 pm »

I plan on being around for a long time.

If something unforseen happens, then so be it.

I listen to my docs not the all knowing fortune tellers or people who think they can predict my future. I just turn them off.

Mikey

gemini20 · « **Reply #47 on:** April 04, 2007, 06:33:53 pm »

Surely the length of time you will live after diagnosis is somewhat determined by your age when this news is delivered to you.

I remember a couple of years ago there was a case here in the UK of a man who was jailed for infecting his female partner - she was aged 81 or 82 when diagnosed - I would think that no amount of HIV treatment is going to give her a life expectancy of another 20-30 years.

Personally I wish I hadn't spent the first decade of my diagnosis worrying when I was going to get sick and/or die. It was a waste of energy and time that could have been far better spent living rather than just existing. But of course when a doctor tells you you've only got 8-10 years to live, which I was told in 1991, you believe them until you prove otherwise.

Thank goodness I reached my 10th anniversary and was able to say 'fuck it' to any life expectancy predictions. I have lived every day after that as if it is bonus time and it's means I now live what I consider to be a really wonderful, fulfilling life.

Oh, and just to note, I remember a young HIV positive man who was in my 'youth' group when I was a young newly diagnosed woman - he did get hit by a bus and ended up paralysed and in a wheelchair. So that phrase always makes me think of him.

Just my thoughts,

Emma

xyahka · « **Reply #48 on:** June 06, 2008, 11:01:44 pm »

When i was diagnosed i was told i could live at least 20 years... because of the meds and this and that yadda yadda yadda... when i asked why everybody was always mentioning 20 years only and what would happen after those 20 years... the only answer i got was... "none knows...".

Juan Carlos

LordBerners · « **Reply #49 on:** June 07, 2008, 01:19:26 am »

My doctor gave me the 'normal lifespan' pat answer, but I certainly did not believe him.

MarkB · « **Reply #50 on:** June 07, 2008, 07:11:05 am »

I have never put that question to a doctor, but at the Clinic the information was volunteered that no doctor can speculate as to how long someone is going to live. My own GP here in the wilds of nowhere said that he saw no reason why I shouldn't live as much as ten years.

RapidRod · « **Reply #51 on:** June 07, 2008, 07:25:37 am »

aelwyd, there is no guarantee that you will wake up in the morning, but if you are compliant with your medications there is no reason that you won’t live out your life and die of old age. Your doctor’s 10 years thought is way behind times. There are a lot of old farts on here like myself that have lived with HIV over 20 years.

GSOgymrat · « **Reply #52 on:** June 07, 2008, 09:37:02 am »

When I was diagnosed in 1993 doctors told me 5-10 years. Then a year later an ID doctor told me to get my affairs in order. When 2003 rolled around and my counts had improved and my partner was doing well I was very optimistic that we were both going to live a normal lifespan. Now in 2008 my partner has had two different HIV-related cancers. Knowing that our metabolisms are out of whack I'm concerned that cancer, heart attack or stroke is going to take one or both of us before we reach retirement. The bottom line is you don't know: you could stroke out tomorrow or live to be 99. No doctor can tell you how long you are going to live.

What I'm talking about isn't "hit by a bus" scenarios. HIV and medications take a toll on the body.

aliveinla · « **Reply #53 on:** June 07, 2008, 10:50:36 am »

"how long" was my first question to my PCP doctor. He said "almost normal". I didn't quite believe him so I searched Internet, came across the NIH paper of "on average, poz people live 20 some years after diagnosed, with modern medicine", so I will die around 60yo. My ID doctor told me the "normal lifespan" answer, so did most people on this board, now I am a firm believer that I will live a normal lifespan, with proper care.

Oh, I believe there will be a cure within my life time.

MarkB · « **Reply #54 on:** June 07, 2008, 12:50:03 pm »

Quote from: RapidRod on June 07, 2008, 07:25:37 am

There are a lot of old farts on here like myself that have lived with HIV over 20 years.

Hey ... I'm an old fart. Does that mean I get another 19 years??

RapidRod · « **Reply #55 on:** June 07, 2008, 01:02:05 pm »

aelwyd, plain for your future, it's too early to think about poppin' up daisy's..

megasept · « **Reply #56 on:** June 07, 2008, 01:35:15 pm »

Quote from: BuckmarkTX on March 25, 2007, 09:54:38 am

But I'd just like to remind you that your doc does not have all the answers. Part of it is up to you, insofar as living a healthy lifestyle. And part of it is up to chance / luck / divine intervention.

Regards,

Henry

healthy lifestyle + luck + divine intervention = longevity

Well put!

-megasept

MarkB · « **Reply #57 on:** June 07, 2008, 02:11:48 pm »

Quote from: megasept on June 07, 2008, 01:35:15 pm

healthy lifestyle + luck + divine intervention = longevity

Well, I can go with the first two, anyway!

I have always felt that the measure of life is its quality rather than its duration. What I have learned again since diagnosis is that it is not how many days I live that counts, but how fully I live each day. Thanks to some of you, I am still alive (for the time being, at any rate!) to remember that fact.

next2u · « **Reply #58 on:** June 07, 2008, 03:05:53 pm »

my gp said 10 years. bastard, it was the first time i met him after diagnosis. then, i went crazy and pulled up these fucked stats on a grip of websites. 26 years was an average that stuck in my head. AVERAGE - that word is such crap. anyhow, i came across some other sites that said normal life span. my id doc also said normal life span. the women live a lot longer than the men in my family. i believe i will retire and live the long life ive dreamed of - hopefully with some sex in it.

blondbeauty · « **Reply #59 on:** June 07, 2008, 07:43:35 pm »

I don´t see myself as an old man...HIV has nothing to do with this feeling.

J.R.E. · « **Reply #60 on:** June 09, 2008, 07:57:48 am »

Hello,

You may just outlive your doctor !!

Ray

dixieman · « **Reply #61 on:** June 10, 2008, 10:28:29 am »

Wow! what a odd question... I've had so many doctors over the years... one of my first doctors stated I would probally be dead within 6 months to a year... well after several initial visits to his office he did not show up to the office for his appointments one day. This was extemely odd for this doctor ... come to find out he had a FATAL heart attack at the ripe old age of 50. So to the man who said I would live possibly a year at most... its now been 17 years... not all easy years but, 17 none the less... so far this year 3 of my friends have passed away 2 from heart attacks and one from an aneurysm all at the ripe old age of 47 and only one was hiv poz... So who knows when its your time its your time... I have stated to several of my hiv infection specialist... who has one of the shortest lifespans of a profession... of all professionals ... well guess... what, its doctors ... generally most doctors do not take care of themselves, its a stressfull job but, percentage wise the odds are against them.

So here I march on... alittle wiser, a little older and not as pretty as I was before the meds but, its remarkable... I'm still here...

John2038 · « **Reply #62 on:** June 10, 2008, 04:15:51 pm »

A doc to his patient:

DOC- Sir, I'm sorry to announce you that you are having a serious disease
PAT- How serious ?
DOC- Very serious: More the time will go, more your health will decline. The death is certain
PAT- What is it ??
DOC- ..the life

Nobody can say how long he will live. But we are programmed to die.
The things with HIV, is that it's a relatively slow progressing disease, and as such, can cause stress and sadness over a long period of time.
If we can control our emotions, then HIV is maybe just like the life.
Probably a bit shorter with, but with a common cause of death: cancer, stroke, hearth attack, etc..

Some doesn't have HIV, and discover that they are having let say a cancer with weeks to live.
Others die just crossing the road.
Compared to us, if we don't try to control our emotions, those people have worry for a shorter period of time, but will die for the same cause of us.
Cause we will die, it's certain. We will have one day this cancer, heart attack or what ever.
We know it.

So how about to live today and worry tomorrow ? As everybody. So the life can be live in its fullest ?
How about then to forget the question ? And the answers ?

Easy to say. But does it make sens anyway to say: I have 30 years to live, if these 30 years are full of stress and sadness ?

heartforyou · « **Reply #63 on:** June 10, 2008, 06:34:50 pm »

Good lord...

I survived 21 years of HIV already.

Another 21 years would make me 73... strange thought , as at 72 I would have lived 42 years with the virus and only 31 without it.

I can see myself watching porn in my wheelchair and delusionally yell at people : I am a suvivor of ~~TITANIC~~ AIDS ...or was I doing that today??? good old brain fog....

hermie

water duck · « **Reply #64 on:** June 11, 2008, 02:25:08 am »

Darling, i shall try to be around to push that wheel chair for you.

And if you yell too much , i shall take great pleasure in sticking you with my favourite 22cm.
Oh by the way , it is in black , or i can hit you on the head to clear your 'good old brain fog '

Wd

littlefire · « **Reply #65 on:** June 15, 2008, 04:26:09 pm »

"The likelihood that you will die in a car crash cannot be ruled out, since there are no pills I can give to bad drivers. But... I do have these for your HIV..."

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Author Topic: Doc, how long will i live? (for the newly diagnosed) (Read 24086 times)