POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Boo Radley on December 19, 2009, 10:30:16 pm
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In a recent post (in another forum) someone stated "HIV is considered a manageable chronic disease for the vast majority of HIV+ people. That is NOT opinion -- it is accepted in medical community." I felt like arguing but controlled myself... for once.
Am I out of touch? Off base? Does the medical community (or whoever...) truly consider HIV infection a manageable illness with which one can live a "normal-ish" life-span? If so it's news to me.
I feel strongly there are many reasons for optimism but also feel it is reckless to make such sweeping generalizations. Just 2 nights ago a friend whose lover is poz told me they have unprotected sex because if he becomes infected it's no big deal -- his lover is doing fine on meds. My response was 1) the decision is theirs to make but 2) contracting HIV isn't on par with getting herpes or gonorrhea.
Such beliefs (i.e., HIV illness is manageable over the long term) bother me because it seems as if many people don't consider safer sex, etc. to be as important as in the 1980s and 1990s. It's quite a bizarre paradox because when I disclose to many guys they're afraid of even kissing but if I did not disclose they'd be up for anything (that's a lot of extrapolation since I live a rather virginal life).
Enough of my blather. What do you think/believe? Thanks!
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Your comments make sense but what makes sense for one does not make it a reality for others. I have been poz for 20 years and I thank GOD have no visible signs so people assume I am fine and are willing to do anything but if they knew I was poz they wouldn't touch me, does it bother me, YES, can I do anything about them, I don't think so cause they are mired in thinking HIV is a death sentence. I think it is managable, but convincing the rest of the world is as likely as them thinking me being black makes my blood and mind less than. There are things in life I can control, my undetectable status and keeping my t-cells in the 800 and knowing that if they get HIV it isn't from me. However, I think educating some will come only when they want to hear it. I by no means live a cloistered life either I am blessed but I don't stress the small stuff :) :)
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For those one pill a day folks, it probably seems like a chronic, manageable disease.
But, I know many people who have slipped rapidly into serious illness because of cavalier attitudes about living with this organism in their bodies.
Logically, I should be able to say if someone takes their meds, they should be able to maintain high T cells, low viral load and live a normal life.
But realistically, I know it ain't necessarily so.
I know quite a few people who are religious about taking their meds, who have undetectable viral loads but whose T cell are still tanked or very low.
Why is this? There could be a variety of reasons, or no discernable reason.
Are these people surviving? Yes. Are they thriving? No. Will they be able to survive into old age like this? Nobody knows, but I have my doubts.
For many of the more recently infected, it seems people are more worried about how they look then the quality of their life. I call it the "will I still be able to date" syndrome.
But realities of living long-term with HIV are very different and much farther reaching.
What do I see happening to myself and others?
The side effects of just living with the virus, many of which are still being discovered by medical science, ravage many of us on a daily basis.
Those of us who took the early meds, and have the misshaped bodies to prove it, also have a very different outlook.
I have survived nearly 25 years since I was told I was positive. Can I survive another 25 and live what might be considered a normal life span?
I don't know. I also don't know if I have the energy to go on that long.
But I do know this isn't what I call chronic or manageable.
HUGS,
Mark
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Well I for one do not think this is manageable. I have had this for going on 19 yrs and although I am undetectable, my cd4 is below 300(going as low as one) and has pretty much stayed there for the last ten years. I do not see my body lasting another 40 years like this. I think if this disease doesn't kill me the medications will. We can only poison our bodies for so long before they simply give out. Even the newbies who are hiv+ and taking one pill a day are still taking meds that are harmful to their bodies. I haven't even mentioned what this disease does to our brain cells in the long run. Its just my opinion take it for what its worth and I hope I am proven wrong.
Best Wishes
JoeJoe
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JoeJoe
Your opinion counts as much as anyone's. My opinion is that I dislike making this a black or white, yes or no, managable or unmanageable choice. Nothing is ever all black or white in medicine.
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Very true Bear60, that's why I said I hope I'm proven wrong.Who knows what new drugs might me coming out anyways, maybe it will become manageable.
Best Wishes,
JoeJoe
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Clearly, in rich countries getting a poz result in 09 is very differant to getting a poz result in 89, but getting cancer , having heart attacks, T . B. is still dangerous and for some deadly even in rich countries. And the demand on the hiv hospital beds is still very high. From my last stay ,a year or so ago, the range off medical problems where still complex, the age range getting wider, with a lot off people redefining" manageable" and " chronic" and grieving people mourning there dead loved ones.
In poor countries , it might as well be 1989 for the amount off choice available. However there are now so many drugs available to treat Hiv it now covers 4 pages in a UK publication Treatment News if you added the statins , pain control drugs , blood pressure and the countless add on drugs the publication could do damage rolled up and used as a weapon. Hiv in rich countries is a huge money spinner a honey pot. Those adverts drug companies put out do not come cheap.The drug bills are huge ,so huge that prevention campaign money has been raided, (although their is money to advertise the drugs that make HIV "manageable" )
When the New Yorker ran its piece on ageing and Hiv it was attacked, shame on it for bursting the bubble off denial that has grown up with the advantages some off us have access to.
This age off denial includes ignoring the unwelcome history off Hiv to surprise, confuse and baffle those who study it. It is still not known what the virus will do now it can be suppressed, what 20/25/30 + years off taking combo drugs will do, one off the things we do know is that hiv is very good at overcoming what is thrown at it, but lets forget that because there must be someway to manage it.
I am trying to make sense off the attitude held by some to Hiv, because it is so differant to my experience. In my opinion its mad in its optimism and cruel in its refusal to acknowledge what a lot off people have to deal with.
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My partner died May 1, 2008 which unequivocally proves
Undiagnosed, untreated HIV/AIDS always has been and always will be a deadly, terminal disease
IMHO there are problems arising from thinking of HIV as chronic and manageable,
which are the same issues that other long-term uncured illnesses have to contend with:
less of a need to spend more money on a "nearly cured" problem,
less of a sense of urgency to find a cure,
less visible education about the illness,
less of a fear to avoid being infected,
less desire to hear of patient's struggles with the disease or the side effects.
It's certainly easier to think of it as manageable disease, than to face up to your own mortality and the realization that it still kills a lot of people world wide, that it still shortens and/or devastates the lives of more in richer nations, and that we have no crystal ball to know just how the current meds will fare in 10, 20 or 30 years hence. What we do know is that the current meds have at least reigned in the deaths and the bodily destruction to give us a chance for a few more years to wait, to hold on, for something better - or for that long-dreamed of cure - to come along.
of course after 17+ yrs, a dozen different meds, side effects, resistance issues, two times in the hospital with OIs and two dead partners (one fairly early in the epidemic in 1994 and one recently in 2008), I'm biased. Between the virus and the meds, I never imagined that I would make it to 35 (and I almost didn't). I was pretty damned surprised then to get past the 45 yr old mark just a couple years back. Just like I never believed I'd make it to those other milestones, I still have no faith that I'll make it to 55. However, I have learned in those "extra" years, through the loss of friends and lovers, to enjoy every day that I am still alive as much as possible; even when many of those days I am left to wonder why I'm one who hasn't died from it yet.
I freely admit that my experiences make me a bit biased, so take my opinion with a grain of salt ;)
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Mikie
Well, you just hit the nail on the head. Its not just a medical question its a political one.
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As someone who had to just recently move across state lines to simply keep getting my meds I do NOT think this is manageable. So far it looks like I'll be able to get my meds from IL ... but what happens next year when the economy is still bad and states make further cutbacks!
When your doctor describes your meds as a "Salvage Therapy" it doesn't really make it sound so manageable anymore. >:(
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Well I for one do not think this is manageable. I have had this for going on 19 yrs and although I am undetectable, my cd4 is below 300(going as low as one) and has pretty much stayed there for the last ten years. I do not see my body lasting another 40 years like this. I think if this disease doesn't kill me the medications will. We can only poison our bodies for so long before they simply give out. Even the newbies who are hiv+ and taking one pill a day are still taking meds that are harmful to their bodies. I haven't even mentioned what this disease does to our brain cells in the long run. Its just my opinion take it for what its worth and I hope I am proven wrong.
Best Wishes
JoeJoe
JoeJoe,
You pretty much took the words right out of my mouth in your post. I've been positive 22 years, not many more than you, and I agree that either having the virus for such a long period of time, or taking meds since 1995, or both is taking a toll at least on my body. I would say my health has declined perhaps 50% in the past year. Doctors are trying to find out why. My CD-4s are stable, and I'm undetectable, but I have been plagued with strange illnesses the past couple of years. More so than ever before and I've been on disability since 1999. I can't help but feel my body is beginning to lose it.
I related where a member posted how people misinterpret or don't get what you are really feeling inside when they say "you look good". They say "how can you be sick all the time." Do they know what it takes for us to look good? For me, testosterone/nandrolone injections every two weeks, working out three or more times a week if I have the energy, eating only healthy foods, having Sculptra touch ups every six months to a year for my face, going to doctor and specialists appointments several times a month, not to mention all the tests we have to take on a regular basis, I had 18 big vials of blood drawn last week, and seeing a counselor every two weeks to keep my head on straight. Not to mention the countless pills I have to take and on and on.
I used to think this was manageable, but I don't know any more. Every month I see my hematologist who is an oncologist who works mostly with cancer patients. Sitting in the lobby while waiting many times patients sit down and start chatting. They talk about their cancer, chemo, but always with a smile on their face. Even though they know they are fighting an uphill battle I see hope in their eyes. And that's where I get my only injection of hope. And in a sense, I know we are family because we know the medications we are taking or having infused have to be toxic after a long period of time.
Manageable, I don't know anymore. Us long termers are truly the trailblazers for this disease. We are the historians from whom science will learn how long we can tolerate these meds, and for how long we can live with the virus. For me it doesn't seem manageable any more. And that's just me.
For what it's worth,
Jeff
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ditto what Mark said.....
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Jeff, I definitely can relate to the whole looking ill part. I have taken very good care of myself, and was already thin before I got this disease. Most of my friends and family forget that I'm even sick, little do they know what I and I'm sure many others have to go threw only a daily basis. I have learned to just push threw the side effects and try to be as "normal" as I can be. None of my friends or family understand the daily battle just to not give up, to keep going despite the hardships I must endure. I am of the opinion that it is our state of mind that determines how sick we get. Positive attitude yields positive results is my personal motto .I will say this, since joining this forum life has become a lot easier. I feel like I have the emotional support that I do not get from most family and friends.I am blessed to have all of you in my life now, so thank you from the bottom of my heart. Thanks to everyone.
Best Wishes,
JoeJoe
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First off, HIV/AIDS is a terminal disease, and no amount of "Psycho Babble" from Congress, the Pharma industry, Doctors, Social service programs, Other People, Health Insurers or any other source will convince me otherwise. How many of you who personally witnessed the early days of this disease actually concur that this is a "Cronic Manageable Disease"?, I suspect a very small proportion of the current HIV+ LTS population.
Anyway, things are about to get very strange for many of our population, due to the financial hardships of many of the States who were placing most of their long term investments in Wall Street, like Arizona has. I personally suggest that all of you start thinking of moving to the nearest "Blue State" you can find since the most hard hit states are mostly the red ones. California excepted.
I am certainly looking. ;)
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That's the gods honest truth Moffie65. I couldn't agree more, unfortunately Texas is my home till I die.
Best Wishes,
JoeJoe
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Jeff, I definitely can relate to the whole looking ill part. I have taken very good care of myself, and was already thin before I got this disease. Most of my friends and family forget that I'm even sick, little do they know what I and I'm sure many others have to go threw only a daily basis. I have learned to just push threw the side effects and try to be as "normal" as I can be. None of my friends or family understand the daily battle just to not give up, to keep going despite the hardships I must endure. I am of the opinion that it is our state of mind that determines how sick we get. Positive attitude yields positive results is my personal motto .I will say this, since joining this forum life has become a lot easier. I feel like I have the emotional support that I do not get from most family and friends.I am blessed to have all of you in my life now, so thank you from the bottom of my heart. Thanks to everyone.
Best Wishes,
JoeJoe
Joejoe:
We're definitely both on the same page about the misconception that HIVer's who look healthy actually are. I find my family are completely under this misconception, as are some of my friends who do not have HIV. I guess you have to go through it, or have gone through it with a really sick friend or partner to really understand. But it does get on my nerves. I'm expected to be doing things as a normal, functioning healthy individual at all times it seems, when in actuality I have to remind, especially my family, I have AIDS and I've been declared disabled by the government. This remark usually goes in one ear and out the other.
I moved three years ago from a location where most of my friends were HIV+, many of them long termers. We did a lot together, and volunteered at our local AIDS Service Organization. Some of us even became members of the Community Clinical Trial Board for the local University to help give input on AIDS clinical studies and such.
Where I live now I really only know one person who is positive. My ASO does not appear to have support groups, and is not as recognized especially in a city of this size. Unfortunately I haven't been out networking as much as well because I have been busy working on a house the first two years, and have had a series of health problems all this year. On the upside though, I have made some wonderful straight friends who I care for very much.
But, like you said, this forum is a blessing for me too. I honestly don't know what I would do without it quite frankly. Everyone seems so welcoming and willing to listen or help you find a solution to a problem. So thank you everyone for that.
Also, in response to another post under this thread, I too have lost most of my friends in the late 80's, and early 90's to AIDS, and miss them terribly. Everyday I have survivor's guilt. But I can't help to think even with the new meds and breakthroughs since their untimely deaths, this is not a chronic, or manageable disease, but in the long run a terminal one. Sorry to say that, but I don't buy in that I will live another 30 years after 22 years of having this virus, and nine years on medication. Just don't buy it!
Thanks again members for all the support, and Poz for creating this invaluable forum.
Best,
Jeff
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Jeff, how similar our stories are. Everything from families not listening, to moving a little over 4 years ago where all my friends where LTS and we too volunteered. I have one positive friend where I live and he is straight, a very nice guy. I too have had a series of health issues this year, plus a couple of moves and more than a few friends have broken my heart. So I can empathize with you. I hope things go better in the coming year and look forward to further discussions on this wonderful forum with you.
Best Wishes,
JoeJoe
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I just take it one day at a time... it seems something always pops up... I've gone through my own little bit of hell but, nothing like so many others... and my cd4's are at 1598... but, issues with my skin, bones, being tired its just not good at times... so no I do not think its a manageble disease but, I just do the best I can... I promised my dad I'd never give up so here I am...
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I kind of look at it this way:
HIV medications only work for about 2/3 of the people who GET ACCESS to approved therapy. Right off the bat that eliminates a large number of people and assumes there is no access problem and that everyone is being prescribed combination therapy adequately.
And what does effective mean when we're measuring therapy? Typically it means viral supression for 12 weeks in trials and a limited number of adverse events (death and that kind of thing).
Now lets add the myriad of side effects.
Let's not forget the 95% adherance rate for life.
Now let's add the psychosocial aspects to living with a criminalized and stigmatizing disease.
Now let's add all of the behavior changes that one tries to employ to ensure they do not spread the virus to others and adopt to boost our own immune function.
Chronic and manageable?
I say...
Manage this!
:)
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I think all these posts show one thing.... you dont 'survive' unless you are a fighter and strong in mind and body... and even then...
When I look back at the last 23 years I see a lot of struggling to stay alive and sane.
Never thought I would ever be 50 and now I will soon turn 55.
That is a surprise that puts a smile on my lips.
But yes, we don't know how our bodies will deal with the meds in the long run...
carpe diem and Merry Christmas to all of you
Hermie
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I've been poz (diagnosed) for 13 years and probably, truth be known, a lot longer than that. Like many of you, I started with the ultra strong protease inhibitors. My first combination therapy was Crixivan, AZT and 3TC. I did very well on that combo besides the serious lipid issues. My triglycerides went through the roof. Along about that time I went on Sustiva and combovir. This was an easier regimen for me, virtually no side effects and stayed on that for several years until Atripla came along.
Have I managed the virus? Yes. Is it chronic? Yes It is manageable (for me)? Yes. I say this as I have always been known as the poster boy (man) for compliance. In all the years that I've been on meds, from week one of diagnosis, I can honestly say that I've never missed a dose.
I do think for many, it is manageable and I will live a long and productive life. I've been very fortunate to have always had great insurance and a great job. Sadly, its not the same for millions of others that are infected.
I really believe that your outlook has a great deal to do with your health. I think that I will see a cure or at least a vaccine to eradicate the virus to levels that will do no harm.
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For those of us infected approx. 10 years before the protease drugs became available, I'm not sure that anyone knows exactly what this virus has done to our bodies. I think it's a "find out as you go" kind of scenario. I know my organs are enlarged, and my G.I. tract motility is greatly decreased....just these two issues (out of many) make things uncomfortable a lot of the time. Add to that neuropathy, cardiac issues, DVT issues, lipo .... not a pretty 'overall' picture.
The hardest part of my day is getting out of bed, and getting ready and dressed. I feel so rough in the mornings, with nausea and some dizziness. It feels like I've put in a whole day by the time I arrive at work...
I'm sure I'm singing a tune that many of you know by heart....
hugs,
Alan
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The hardest part of my day is getting out of bed, and getting ready and dressed. I feel so rough in the mornings, with nausea and some dizziness.
I'm sure I'm singing a tune that many of you know by heart....
Wonder why that is? I always have to set my alarm clock at least 2 hour early whenever I have a morning appt because I never know how terrible I'll feel, how long that'll last, or how long it'll take me to get dressed and get out of the house with passing out or puking. ;D After I get started (finally!) and going, the rest of the day isn't near so bad; but mornings - sheesh! I hate 'em.
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I have definitely put myself in a quieter mood after reading the post, but I have to say having been an athlete I never wanted to live to be 80 becuase my joints are going to be shit from all the beating they have taken and when I look around at the world obesity,cancer, diabetes and the list goes on I don't see myself any worse off than those folks, so I have to wondered what is so unmanageable. I don't know what life would have been like without this disease, but I kind of think of myself as fortunate in that things could be alot worse and I could be a whole lot less active, more friends, financially free but those are things that I have limited myself not this disease. I admit since finding out I was HIV+ and taking meds my body has reacted very well and I don't have the visible proof but chronic ( yes , I think I am confronted with it constantly)manageable(yes, I take more antidepressants- prior to HIV)joyful ( I constantly look for it) so I guess I continually look at my glass as half full because it just doesn't feel empty...( the water is foggy,liquored and warm)but drinkable.
I guess I will start to worry when I think it looks empty but after trying suicide 3 times and being told" NO" I just decided you better find a way to live peacefully...Have a blessed day( anything short of death)
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the sick, the dizzy, the tired... the pills, the bills.. manageable...not so much
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For those of us infected approx. 10 years before the protease drugs became available, I'm not sure that anyone knows exactly what this virus has done to our bodies. I think it's a "find out as you go" kind of scenario. I know my organs are enlarged, and my G.I. tract motility is greatly decreased....just these two issues (out of many) make things uncomfortable a lot of the time. Add to that neuropathy, cardiac issues, DVT issues, lipo .... not a pretty 'overall' picture.
The hardest part of my day is getting out of bed, and getting ready and dressed. I feel so rough in the mornings, with nausea and some dizziness. It feels like I've put in a whole day by the time I arrive at work...
I'm sure I'm singing a tune that many of you know by heart....
hugs,
Alan
Sweetie, you hit it on the head! I thought I was the only one who seems to have a problem with mornings. What really annoys me is, even when I get going, I feel like going back to bed because I am just flat tired.
No reason to be, but I am. Or maybe we do have a good reason. I have lived with HIV for going on a quarter century and I know you are right there with me.
I know I may sound vain, but the body shape changes also get me down when I let them. I don't wear T-shirts in public any longer. I can't wear a tie well, and when I do, it is a short duration affair.
I can't put my head back when I sit or lay down. The hump forces my head to a bizarre and, usually, uncomfortable position. :-[
My horse collar neck does allow me to do a splendid imitation of Jabba the Hut, though. ;)
I got my lipids under control by eating a mainly vegetarian diet - plus a boat load of supplements including fish oil. This is something I will probably have to deal with for the duration.
I'm not qvetching. I'm just stating the facts of life as they exist for me.
I am usually very glad to be alive and I've learned to live with what life hands me.
But there are days . . .
HUGS,
Mark
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Jeff, how similar our stories are. Everything from families not listening, to moving a little over 4 years ago where all my friends where LTS and we too volunteered. I have one positive friend where I live and he is straight, a very nice guy. I too have had a series of health issues this year, plus a couple of moves and more than a few friends have broken my heart. So I can empathize with you. I hope things go better in the coming year and look forward to further discussions on this wonderful forum with you.
Best Wishes,
JoeJoe
JoeJoe,
It looks as though we are soul mates in a sense sharing such similar stories. Almost to the letter. It is such a relief to find members like yourself who understand how things are, knowing that you are not alone as far as all of this is concerned. Please know I'm here to support you 100% and I too look forward to further discussions with you. You sound, and I'm sure are, a terrific guy!
Hopefully 2010 will be better for both of us.
All my best,
Jeff
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Jeff, you too have my complete support in all your going ons for 2010. It is nice to have this forum and on a lighter note, 2010 is looking really good as I have met someone who is the same age and diagnosed date as me by six months. He is wonderful and we are very lucky to have found each other. So 2010 bring it on, I'm here to stay.
Best Wishes and a Happy New Year,
JoeJoe
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When I first came onto this site this morning, I voted that I think HIV is a chronic/manageable disease. I have lived with it for 22 years now and after reading some of the replies, I think I am in some sort of denial about the disease. I do struggle with it every day even though I am not "sick". I live with constant concern that some catastrophic illness is lurking in my body to devour it. It is weird that having lived with it for so long that I can think that it is not there. I see doctors probably twice a month at least and sometimes even more. I guess the virus is "manageable" but it is a killer and I still have the nightmares of the late '80s/early '90s when my friends were dying. I survived (lived), but I guess I am not free of the disease. This conversation has made me think again about living with HIV.
I hope 2010 is a good year for all of us, and I pray that all of you LTS friends stay healthy. With support, we will get through it all.
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There is the perception that if you are infected, HIV is manageable. It involves management of your health through doctors' appointments, hospital visits for blood work and appointments at hospital pharmacies to pick up your necessary HIV/AIDS medications. You must manage the side effects of the drugs and drug resistance. There are the demands of managing to overcome each opportunistic infection. All of these are essential to manage to stay alive!
I have lived infected with HIV since 1984. Manageable, yes, but not always easy!
Bradford
www.PositivelyPositive.ca
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Jeff, you too have my complete support in all your going ons for 2010. It is nice to have this forum and on a lighter note, 2010 is looking really good as I have met someone who is the same age and diagnosed date as me by six months. He is wonderful and we are very lucky to have found each other. So 2010 bring it on, I'm here to stay.
Best Wishes and a Happy New Year,
JoeJoe
JoeJoe:
Thanks for your continued support JoeJoe. That means a lot.
And congrats on meeting someone so special. I am so happy for you. This is a great start of 2010 for both of you.
I've been having a long distance relationship almost four years now. It is complicated because we live quite a distance from one another and it is expensive to travel back and forth. But we're optimistic, when the time is right, all will work out when we can be together. He's a great guy and we keep in touch daily. We'll see what 2010 holds for us.
In the meantime, Happy New Year to you. Again, it sounds like you have a great start.
All my best and we'll be in touch,
Hugs,
Jeff
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You want to hear something weird my guy lives in Dallas an hour and a half from me, the similarity's are very comforting in a way. I feel less alone than I have in years. So goodluck to us all on doing what it takes to find happiness.
Best Wishes,
JoeJoe