POZ Community Forums
Main Forums => Living With HIV => Topic started by: SanDiegoMan on January 18, 2008, 05:20:29 am
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I was diagnosed about 18 months ago with AIDS. Initial tests showed viral load above 580000 and CD4 count was 66. I had no opportunistic infections if fact felt pretty good other than a bit tired and some minor weight loss. i did have a bit of thrush at the time and some odd dry patches of skin. other than that i was fine and remain VERY healthy. cd4 count is like 290+ and have been undetectable for about a year now. everything i have read to date suggests that chances of long term survival for hiv infected people is quiet good with treatment. Well after having a disagreement with a friends roommate who studied hiv in school while becoming a biochemist. She told me 10 yrs max survival was what she knew. a I said" your wrong" and went online to show her. well later i was thinking about she said, she must have had a reason to Say that. After all she only graduated 1.5 yrs back, and was really into research on this virus. So.....i decided to type" life expectancy after AIDS diagnosis" into my browsers search and much to my surprise the survival time for aids diagnosis was 4-6 years on average even with HAART. latest #'s were as of 2003. Needless to say, i was horrified to realize that i may have spent 50% of my life expectancy doing nothing, thinking i was going to live a long happy life ... i considered my children, girlfriend and what i might do now? i came here first to get feedback from the experienced. Again I have responded well to meds(truvada,norvir,reyetaz) no side affects and i am one of the healthiest people i know and that is comparing to noninfected people. WHAT SHOULD I BELIVE HERE? what r your experiences and if u were givin an aids diagnosis and are beyond 6yr. survival i would REALLY LIKE to hear from you. any info is appreciated. By the way when i first found out, i thought that i could let this be the worst thing or make it the best thing that ever happened to me. I chose the later and have maintained a very optimistic outlook. if your new and having trouble coping i'll be glad to share the perspective that has kept me going on , acting and thinking as if i were non infected (other than watching diet taking meds and regular doc visits) Life goes on.... unless you choose otherwise.
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Live life to best of your ability and don't worry about the numbers game. No one knows how long anyone will live. A lot of us are on new drugs that haven't even been out long enough to give an educated guess. Look through the obits every day. If you don't see your name, then you're still living.
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Eep. I must have one toe in the grave already.
But then, didn't I always? :o
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I think there are many that started the first available meds back in 1995 that are quite with us today. I had one friend that after ten years on meds, had a cd4 of 900 and always undetectable. He passed away last April, but not of any aids related thing. He had a heart defect from childhood that the doctors put off too long to fix and that was his downfall. It was sad since he seemed to had beaten the aids thing. So if its not one thing its another.
My luck, they would find a cure and I'd get hit by a drunk driver on my way to the doctors to get the cure shot.
I think any professional that would claim to know how long one has or can expect isnt very professional.
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"Life goes on.... unless you choose otherwise."
True. I'd like to contribute something here that will be encouraging yet not over the top exuberance.
DiegoMan, you could watch your grandkids' graduation ceremony and see them exchange vows/get married. Possibly be there when their kids are born. Regarding your HIV+ life henceforth, who can foresee your future with absolute certainty. New meds in the works and all that.
BTW, some fairly outdated shit statistical data on the internet too. Don't be gullible by believing everything you retrieve through random internet fishing. ;)
Mike M
8 years on Meds
18 years since diagnosis
probably, infected 20 yrs with HIV.
edited: for suckie sentence structure.........that I could not ignore.
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These days there are many who are well into their third decade of living with HIV. And I foresee that number becoming ever larger.
While genetic inheritance likely plays some part, taking care of yourself regarding nutrition, exercise, reducing stress and all that other good stuff unquestionably has its effect.
I get really pissed when I hear of someone spouting the ten years line because it bespeaks to me of someone who is not really involved with HIV. It's thoughtless, it's unfeeling and it's inaccurate. It serves no good purpose that I can see.
What is more to the point is to take good care of yourself and while you're doing that to make the most of the life you have and let the friggin' future take care of itself.
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I was diagnosed with "full-blown AIDS" in 1994, so, um, that makes 13 years I've had an AIDS diagnosis. And I'm going to school finishing a degree. The meds today are so much better than what they were in the early 90's. Don't ever estimate how long life can/will/should be. Just take each day and do what feels right.
Peace-
Betty
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well goes to show you ANY egghead can sit and do research with enough cheetos to sustain them in the wee hours of the night! The person who said blah blah blah about AIDS is really talking out of her ass. first off, being HIV+ and being disagnosed with AIDS is not the same level of concern on the continuum of hiv/aids concerns. secondly, based on your labs a lot of people would probably say it is a damn miracle you felt so well. As for life and expectancy, no one is ever promised another day, hour, minute, second and i agree with the notion that i will probably be hit with an astroid on my way to get the cure shot, ha. nonetheless, the diagnosis of hiv+ is an opportunity for you to stop existing and truly live...regardless of how long it will be. Zan
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Hey SanD Man:
If 4-6 yrs is the average there's alot of average dead people on this site! Granted all the below avg. are nt on here! lol... Glad you found out in time... on meds, and doin well. The rest is all gravy. -H
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San Diego Man
I have good news for you:
1) The article that comes up at the top of the list when you do the internet search you described with the 4-6 year life expectancy was from January 2005 based on a 2003 study. It is dated. There is a lot of more recent information on life expectancy out there which estimates much higher life expectancies -- in the 10 year range from an AIDS diagnosis and 20+ years from an HIV diagnosis, when there is access to HAART. Of those studies the one that I've found most useful is at www.stat.sinica.edu.tw/jshwang/paper/3_Life expectancy [QJM].pdf (hope this link works, I haven't tried posting a link here yet)
2) There's a lot of confusion around what life expectancy is useful for and when it is not useful. Details belows, but basically life expectancy after a diagnosis of a very severe but treatable condition is not a very useful piece of information for those who survive diagnosis.
Details?
The issue is based on how life expectancy is defined. Life expectancy is the weighted average of the amount of time people with similar conditions have lived or are expected to live. As an example, if one third of the people diagnosed with AIDS live for a half year and the remaining two thirds live for exactly 15 years, the life expectancy would be 10.2 years.
That means that your life expectancy if you survived the first year would go up to 14 years! Life expectancy isn't a little clock ticking off the hours you have left to live; in general for most people, surviving a year means that their remaining life expectancy goes down by less than a year (in other words if you life a year your average expected date of death goes up a little less than a full year). When there's a big risk of death in the first year (such as after an AIDS diagnosis, or in the year of birth) life expectancy can increase for those who survive that first year.
3) The extra risk of death from AIDS if you survive your first year and have access to HAART appears to be only about 2% per year and good adherence may improve your chances even more
Details?
People first diagnosed with HIV and AIDS at the same time are often very sick (I was) and many have waited so long to get treatment that they do not survive. Go back to that paper cited above. It shows that 34% of people diagnosed with AIDS did not survive the first year. Another 8% did not survive to the end of year 6. But that second number means that if the study started with 100 people, of the 66 that survived the first year only 8 died in the next 5 years. That corresponds to a annual chance of dying of about 2.5%, about 2% higher than the risk in the general population.
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So what lessons can we learn from the above? First, if (like you and me) one is diagnosed with AIDS it is very important to get a doctor, start treatment and take care of yourself in that first year. Afterwards, while there are no guarantees, you have a good chance of living a long life, especially if you can remain adherent. And for those diagnosed HIV+ but not yet AIDS getting appropriate monitoring and starting treatment well before AIDS looks like a lifesaver.
Others have commented here and in other threads that quality of life is more important than duration. I agree. But it is also helpful to understand the real (and hopeful) message behind recent studies.
Hope you have a long and happy life and succeed in making your life mean something to those around you.
Assurbanipal
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:) :) :)
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8)
I am in my 24th year with HIV and in my 7th year of AIDS diagnosis. When I was first diagnosed with AIDS, I had a T-Cell count of 6 and viral load count in the millions. I also was diagnosed with 3 opportunistic diseases at the same time.
I barely survived that, but today I have a T-Cell count of 491 and am undetectable.
I am 57 years old, (58 in August) and I know I have outlived most estimates for me. I also know of many more who have been diagnosed with HIV in the 1980's and have gone on to AIDS who are still with us.
My doctor tells me I am more likely to die of old age or something else. He's just being funny.
Don't worry about it because you can't do anything about it anyway. You will die --SOMEDAY--Just not now. Live your life with the notion that you have a lot to offer the world, because you do. If you can, work. If you can't, volunteer. Or maybe do both.
Blessed be,
Jim
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Hey SanDiegoMan. An HIV+ diagnosis is quite frightening. Maybe not as much now as it was in 1987 when I was diagnosed. At that time, I was given 6 months, maybe a year, to survive. AZT was just becoming the drug, but it was not a good thing for most. I never used it as a mono-therapy. I have been taking combivir and viramune for 7 years. I lived 14 years with no meds. It can be done, if you believe it can be done and live life accordingly. I hope that we can still be chatting in 20 more years.
You are very lucky to be living in times like this. :)
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Over 20 years since I found out I was HIV positive. I have never had a disease associated with AIDS. Have been taking medication for 15 years. Here I am approaching 60 and the possibility of retirement without ever thinking it was possible. Don't believe every thing you read. Just believe.
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Hey who knows how long one will live? Back in 1991 I was given the death sentence... 1995...I told my Dad I was poz.. he said" Never give up" later that year he passed away.. so here I am... cd4 count 1956... non-detectable... older, wiser and not as pretty? LOL but I'm 47 and I have never given up... alot of it has to do with you! I've outlived more than 50 people around my age... some died from aids... cancer... car wrecks etc... but, here I am... still employed... healthy as one can be with this virus... You can dwel on this obstacle in your life or you can meet the challenges and move on ... Were all going to succumb to death but, live with Great Expectations for the Future... as auntie Mame said... live... Live... LIVE! and when its your time its your time... so far I've out lived 3 of my doctors... one was elderly but, the other 2 were around my age... figure?
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My partner was diagnosed 2 1/2 years ago with AIDS. He had a CD4 of 5! His Viral Load was 40,000. He has never been sick or shown any signs of being HIV+. He's been on HAART since diagnosis and other than the first two weeks... he's not experiencing ANY side effects from the drugs. His CD4 is now over 290 and his VL is undetectable.
I'm negative and I've been sick with colds, flu and even the NORWALK virus! He's the healthiest person I know!
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Come February 12th, I will see another anniversary pass from the day I was told I be HIV positive in 1982 and come March 3rd, another anniversary pass from the day I was diagnosed with AIDS in 2001 with 3 months to live.
With a rollercoaster CD4, currently 326, and still undetectable, I find it absolutely amazing how well I am doing compared to others. Other than the known side effects of HIV and the medications, life goes on..
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I have learned not to believe anything the x-perts claiim. I know a dozen or so men who were fully diagnosed with AIDS 15-20 years ago and still doing fine, sure a few medical crises here and there but still quite alive
I have been poz for over 22 years now and to date no major OI's. Was on cocktail for 7 years which almost killed me. Been off all meds now for going on 3 years, V/l has been undetectable with T4 range 500-600.
I was told in 1985 I had a year, two maybe. NO two people are exactly the same. I have also known a few men who were literally at death's door, in hospice with days to live, went on cocktail and are still here today, doing quite well. I have also known others who were dead within months of diagnosis.
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My dear man - I am so sorry to hear someone handing you a line like that! I was diagnosed in 1986 and was given 18 months to live. Guess I'm too stubborn or something. This June 17 I'll be celebrating (and I do celebrate that anniversary) my 22nd year.
Hang in there!
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Hey there,
I was diagnosed in 1985 right before I graduated high schooll. I'm turning 41 next month thats about 23 years with and AIDS diagnosis. You just never know. I just try to live life with no regrets, keep planning for the future and not be disappointed if things don't work out.
Stay Tough (with a soft heart)
Sharkie
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I am giving a thumbs up and me too to what everyone else has been saying.
I cried when I was first diagnosed because the docs said "Oh with today's medicines you can live 10, 20 years maybe more." Of course I was in hospital with PCP and another type of pneumonia, severe anemia and a plethera of other issues. But I read around here (I'm a chronic lurker) when I get really down and am reminded that we all have to just keep on living and no one, absolutely no one has an expiration date. The minute you decide that you're dying is when you're going to start dying. I have to remind myself this every time I get depressed about my status.
Like I always say "eat right, exercise, and die anyway"
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Let me tell you something. It was the Friday before the big earthquake in 1994 (which was on a Monday, Martin Luther King Day; I remember it like it was yesterday) that I was diagnosed and told I had eighteen (18) months to live. I had CD4's, low percentage (21%) and low platelets (under 50,000). Today, my CD4 count is over 1200 and I am totally undetectable. I live a (fairly) normal life with a full time job (that allows me to "go at my own pace") and feel great. I have the BEST doctor in the world. His name is Jeffrey E. Galpin (I suggest you "Google" him). I am on Atripila and Hydrea. I am now 49 years old and even though I have some cardiovascular issues (inherited having nothing to do with HIV), I am a survivor. Of course, I have had my "issues"; but I also have a friend who had a (successful) heart transplant last year and now is in need of a kidney transplant (having to be on dialysis three days a week) with a very positive attitude and a life that I cannot even imagine. Now. . . . .ask me how I feel?! My advice to you is live your life, find the right "cocktail" and the rest is up to you! :-)
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I was diagnosed hIV in 1994 and AIDS in 1996. It seems then the average life expectancy was about 5 years. By 1998, I was told to expect to live to see old age, unless I get hit by a bus. I am very careful around public transportation.
Recently, I was talking with my ID doc and he said 5 years was once the expected norm to live with HIV but now, we are looking at the total health of the patient. I was hoipng to live 1 day past my 70th birthday because, that is the day my life insurance policy expires. If you knew my family like I know my family, it would be such a hoot to outlive the policy by one day. ;D Have the best day
Michael
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I am very careful around public transportation.
;D thanks for the chuckle ;)
mikie
(who doesn't believe in the mythical bus)
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I tested positive February 19, 1993, and started meds March 1996. I've been really fortunate and very lucky with only a few med changes over the last 11 years. I remember telling my Father the day after I tested positive, who told me he'd be there for me if I needed him. Sadly, I got to return the favor when I cared for him here at home in 2003 when his Alzheimer's got the best of him. Dad passed away October 2003 with me at his side.
And yes, I'm having a "celebration" of sorts next month with friends at my favorite Mexican restaurant acknowledging the last 15 years of a sometimes scary, and sometimes wonderful, life.
My only concern now is about riding public transportation... our bus system here really sucks... :) ;) :D ;D
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:oI put that hter cause thats the look the doctors had when I servived colon cancer! You see I got my official HIV/Aids Test done in 89. Yet back in 82 I was hospitalized with a bad sore throat. So bad I could not swallow my own spit. Well any way thats when I think and feel that I really got it. In any case I can honestly say that I have been HIVPOZ since 89 and that I had the bad ass penumonia in 97 and then colon cancer in 04 and I am still here. They said that I had only about a 25 to 30 % chance of making it thru the cancer and well I am here three and a half yrs later and I did go thru the pnumonia again last august and again I beat it and am still here. Healthy folks(thoese with out HIV/AIDS) are dropping dead around me and I am still here!!!
It is all the way you deal with it.
I always say it is never what you do it is always how you do it.
I am still here and I plan to be here for a good long time.
I just met some one after 7yrs of being sigle and I am not going anywhere for a long time
:) ;) :D ;D 8) ::) :P
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I have been HIV+ since 1981. I think what everyone needs to understand is that there is a difference between testing positive to the virus and having AIDS. There is a different life expectancy for each and they are not the same. I have never had a diagnosis of having AIDS, just a positive exposure to the virus.
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I hate to be the bearer of bad news, but:
"Life Expectancy" as a demographic or actuarial concept is a figure that is derived from a complex series of social and medical criteria. To blithely say that you have two years to live -- which a doctor told me 18 years ago -- is extremely cavalier and downright contemptable in practice, particularly for people who are coping with living with what is still a long term chronic condition.
This is further complicated by your access to treatment, your genetic makeup, plain old luck, etc. etc. Even "nomative" life expectency -- which I would imagine hovers around 76 or 78 these days for a middle-class white native-born American with decent health insurance -- is a drastically simplified figure: in reality, life expectency is bimodal (or "two humped"): people with many long term chronic conditions (oh, there's that phrase again) tend to live until their sixties or early seventies, while the robust elderly can survive until their eighties before systemic failuire occurs.
In the case of HIV infection or AIDS -- using "AIDS" as the correct diagnosis for a series of symptoms or characteristics that mark advanced progression -- the jury is decidely out. The optimistic predictions of the past decade -- which arose from the sometimes miraculous effects of new drugs -- have been tempered by the realization that the virus is still capable of long-term, systemic damage: a "Post-AIDS" syndrome that can include new cancers or neurological complications, which are hard to parse from the effects of getting older. It is perhaps wise to remember the virulence of the diseases that occurred at the beginning of the epidemic, and the panopoly of conditions that are being seen now in the long-term HIV+.
Bottom line: cautious optimism is a good thing, but looking fo a statistical predictor, in my opinion, is an endless snipe hunt.
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Someone remind me again why exactly I want to live to be 80? From what I've seen of it, its not a barrel of laughs.
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LOL Northern Guy...
For me it would be cool to live to 80 with the knowledge that HIV didn't take me earlier like so many of my friends from the early 80s. Having said that, and knowing that death at some point is inevitable, I hope that I am aware of my surroundings, cognizant of my being, and go out with some style and grace, so my passing is as painless to my family as possible.
Either that, or drop dead in my garden while transplanting a rose bush. :D
What ever God decides will just have to be okay. ;)
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I think quality of life (and death) matter a lot more than the length of time.
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I think quality of life (and death) matter a lot more than the length of time.
This is so true. I know that when I'm feeling really down, I don't do anything (go anywhere etc.). I usually have to try to make contact with some friends or something to pull me out of it.
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I've seen so-called "healthy" people leave in a flash, and the ones who everyone thought would be the first to go still around.
HIV treatment is constantly evolving and improving for the better. Keep on top of your health and live each day.
You've received some great guidance from othere here that I'd agree with.
To many many more years!
:)