POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: worriedfriend on April 20, 2007, 04:28:16 pm
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Does anyone know the oldest person who lived with hiv, I have heard stories of 20, 25 years or so. If anyone knows, I would really like to know, if perhaps one of you have been living with it for several several years or know of someone else who had it for 30 years or so before they left us.
Thanks so much
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Hi Worried,
with the new medications there are many many people who live longer now and there is a lot of work done to minimize the side effects of the medications. You might want to read the stories from the Long-Term Survivors forum and this thread: http://forums.poz.com/index.php?topic=11342.0
Milker.
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Just one word : "wishihadacat" 28 years .Oops that makes 3
:P
http://forums.poz.com/index.php?topic=10559.msg130714#msg130714 (http://forums.poz.com/index.php?topic=10559.msg130714#msg130714)
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You know, I have been thinking how hard this is, for those that have to live with this and for those who don't' have it, but have loved ones and very close friends. Certainly it's not has hard, but man I sure have my days. I wanted to say that all these nice responses and all the stuff I have learned, I'm feeling much better about my best Friend. If he can stay around for like 20 some years like many of you, who knows what advances we will have by then. I would like to think that in 20 years, we'll have a cure, or if we don't have a cure, we have medicines with little to NO side effects and people can still live a normal life expectancy, sorry for spelling.
Words of encouragement from the many stories and I just need to keep thinking positive that my friend can live a good 20 plus years, maybe longer. My problem is, I went directly to the end of his life thinking, oh my god I can't loose this friend, how would I go on without him and I need to stop thinking that way and live in the NOW.
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I do not believe it matters what your age is, how long you have been infected, because the real issue is not how long you live with HIV, it is HOW WELL YOU LIVE WITH HIV. Often perspective can be everything.
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From what I read, this disease is so strange as one person may need to be on heavy medication for YEARS, then Joe Smo, who has had it from 20yrs doesn't need any meds and is doing great. that must make this disease so hard as there isn't a SET group of steps to do, not everyone takes the same meds and does the same stuff. It sure would be easier if this disease wasn't so damn smart. Who knows, just a thought you know.
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Newly diagnosed people are very lucky to have access to medication that is a lot less heavy . Our LTS friends have had to endure much more than we newbies will have to go through. But the fight is not over.
Milker.
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A wonderful artist I know in SF, who was one of the panelists on a LTS panel which I chaired back in the early 90s, has been HIV+ for over 30 years. He's also one who has been a longtime non-progressor. No adverse changes in his health and he's not on meds and I still hear from him regularly.
He's not the only one. When I was doing research on the subject at that time, it was amazing how many people got in touch who were then well into a second decade of good health. I think Dr. Susan Buchbinder in SF Health is still following up on many of them and continues to study the various factors which may make a difference in maintaining good health.
With the continuing development of effective new medications and knowledge about other factors which maintain good health I see every likelihood of lifespans with HIV continuing to expand. That's why I get mad when I hear someone say their doctor has tossed off some shortterm prediction when I continue to see so much evidence which points to the contrary. Of course if someone is newly diagnosed and has apparently been HIV+ for an extended period before being diagnosed, that can make a big difference in prognosis. That doesn't mean there aren't problems as we well know. But as a general matter I am increasingly hopeful about longevity numbers for those living with HIV.
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As has been suggested, you might want to take a look at the Long Term Survivors forum. There are many folks with courageous and interesting stories of having lived a long lives while being HIV positive.
I'm one of several AM Forum members here who are termed Long Term Non Progressors (LTNP). It is estimated that LTNP's make up about .3 % of HIV positive people. I've been positive since 1981. I'm now 48 years old.
It seems to me that taking each day as it comes and living life to it's fullest will at least in the short term help give one a more optimistic outlook and possibly enjoy life 'in the now'.
Cheers
Paul
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A wonderful artist I know in SF, who was one of the panelists on a LTS panel which I chaired back in the early 90s, has been HIV+ for over 30 years. He's also one who has been a longtime non-progressor.
Just out of curiosity, how does one actually figure this out with any degree of certainty? The virus has only been scientifically identifiable for 23 years.
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Just out of curiosity, how does one actually figure this out with any degree of certainty? The virus has only been scientifically identifiable for 23 years.
In some cases, folks have had various blood and tissue samples taken for other
reasons / diseases which had been frozen and stored, many years before HIV
could be detected. These have been used in some cases to detect just how
far back someone has been HIV+.
Regards,
Henry
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Just out of curiosity, how does one actually figure this out with any degree of certainty? The virus has only been scientifically identifiable for 23 years.
The virus has been genetically traced back to it roots in Africa. It appears to have crossed the simian/human species barrier in the late 1920's to early 1930's. Though it may well have emerged and died out several times before that.
The earliest cases, proven from frozen plasma samples, date to 1959. They are from a Dutch sailor, who worked in Africa for a while, his wife, and their newborn child.
While a test did not become available until 1984, many of us LTS folks recognize that we experienced classic seroconversion symptoms years before we were clinically diagnosed. In my own case, I was diagnosed just before Christmas 1985. I am quite sure I was infected in the Fall of 82 or Spring of 83, a period where I had long on/off bout with flu like symptoms, night sweats, etc.
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I have heard that the longest lived HIV+ person in Canada was miss diagonosed as being a Celiac and put on a grain free diet. He did so well on the grain free diet that he stayed on it with good results even after getting a poz diagnosis.
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Dear Worried -
Based on risk behavior I can say with absolute certainty that I had to have become infected sometime between mid to late 1979 and the early spring of 1980, which makes it around 28 years, as SASA noted above. I am now 56 years old and I've never had any of the usual opportunistic infections, and I'd have to say that I'm in astonishingly good condition for anyone my age - poz or neg. (Of course, now that I've said that I will probably come down with some bizarre medical condition, and if I do, I will blame you! lol.) For what its worth, I also became coinfected with Hep C back then. I have no idea how many more years I have left on earth in this body, but I've lived an amazing life for the last 28 years, and but for the difficulty of finding appropriate women to snuggle up with, I really can't complain. Other than some generally tolerable mild peripheral neuropathy that began when I started taking DDI way back when, and the emotional isolation that was problematic for many years, I've probably been very fortunate, and when I read the posts of others here who have suffered terribly, it touches me very deeply.
Needless to say, everyone is different. In my case, my doctor and I are reasonably certain that I am lucky enough to have at least one genetic receptor mutation that has kept the monster at bay, and the only real side effects that I experience from taking Atripla are very vivid dreams (which I kind of enjoy in a strange way) and some sensitivity to foods that sometimes induce mild gastrointestinal discomfort.
On the plus side, I believe that having HIV has actually made me more empathetic towards others, and I try to lead my life with meaning and conscience. I've been a practicing attorney for 25 years, and because I am constantly reminded of the frailty of human existence, I like to think that the virus has made me a better person and a more conscientious lawyer (and no, the two are not mutually exclusive, you wiseasses out there!)
The best advice I can give you is that you try to maintain a healthy diet and take care of your body and your spirit, avoid unneccessary stress, and be as conscious an individual as you can. It may not work for you, but it seems to do the trick for me.
Hang in there.