A new realization: am I in denial about what's going on?

[CalvinC]

Hi all.

The other day, an hiv+ friend and I were talking about the new hiv hospice here in Toronto (to take over from the smaller, older one). And we wondered: Are people still dying of AIDS? Though we're poz, we don't know anyone who has died in recent years. Neither of us have any idea. I've been poz for 10 years and started meds about 3 years ago. Physically, my hiv journey has been, physically, a wonder: no side effects, no financial worries about getting meds, I'm in great shape, etc etc. My friend is equally doing well. So we wondered.
 
But then my friend said: How do we know what the future holds for people like us on serious meds? What happens if the meds stop working? How do such meds affect us over the long term. No one knows because we're living that "long term" right now. 

I reflected on what he said, and that got me thinking (and got me a bit depressed too). I've been living my life thinking that I will live out a normal life span, perhaps dying sometime in my 80s, since I have no family history of any kinds of illness, like cancer, and I don't have any familial history of any serious disease, at all. But when my friend reflected (as above), I thought, well, I must be living in denial. I suppose, after all, I could die in the next 10 years from AIDS. I know I know, it doesn't seem likely -- but who knows the future of this disease? I've been pretty lucky, physically; in that respect, it hasn't affected me one iota. (Socially and emotionally, is another story.) Maybe I need to sober up about this.

Your thoughts?

Cal

[Lightfighter]

If you want to worry for the sake of worrying, sure.

Other than adherence issues, meds are not failing.

I learning in 2005, sweating my ass off in an Iraqi desert that when it's your time, it's your time.  It doesn't matter what you do or don't do.  I live each day for that day since then. I don't worry myself with when am I going to die and from what.  To me, that's not a way to live.  I take my meds, see my Dr and continue. 

Just how I do it and see it.

[daveR]

If you did not have HIV, when were you going to die? A question which nobody can answer. That was one of the concepts I came to terms with very soon after being diagnosed. I could be run over by a bus this afternoon or live to my 90's.
Another thing that put it into perspective for me is that there are a lot of people who take medication for years other than HIV positive people who probably don't even think about it. My father has taken pills an injections for years for rheumatoid athritis, he adked the nurse once if they would shorten his life as he had regular kidney and liver function checks. Her answer was a straight yes. When he asked how long she said one or two years, nothing to worry about. Nobody knows the final date until it comes so just live and enjoy it.
I do take comfort in the long term survivors stories here, meds work for them so will work for you and me.

[leatherman]

What happens if the meds stop working? 

if you stay adherent to the meds and don't allow the virus to mutate, your meds will never stop working

How do such meds affect us over the long term. No one knows because we're living that "long term" right now. 

ha ha ha. Ten years is not "long term". This is my  32nd year of living with HIV, and the 25th year of meds now that's "long term".    I recently turned 55 so I've been taking HIV meds nearly half my life, and I couldn't be healthier or happier.

Personally, I'm more worried about  how long I'm going to live. I take after my Mom's side of the family and my Grandmother, who only recently quit driving and is still sharp as a tack, is turning 100 in August. I'm worried I'll be living into my late 90s like most of my relatives have. At 55 I'm not even "long term" compared to them. I'm just at the halfway point of my life and looking forward to another 55 years. 

[Matland]

if you stay adherent to the meds and don't allow the virus to mutate, your meds will never stop working
ha ha ha. Ten years is not "long term". This is my  32nd year of living with HIV, and the 25th year of meds now that's "long term".    I recently turned 55 so I've been taking HIV meds nearly half my life, and I couldn't be healthier or happier.

Personally, I'm more worried about  how long I'm going to live. I take after my Mom's side of the family and my Grandmother, who only recently quit driving and is still sharp as a tack, is turning 100 in August. I'm worried I'll be living into my late 90s like most of my relatives have. At 55 I'm not even "long term" compared to them. I'm just at the halfway point of my life and looking forward to another 55 years. 

You are just a source of insipiration. I like reading your posts each time.

[bocker3]

No one knows when one will die -- or from what cause.  This is true of HIV+ and HIV- people.

So -- you can choose to spend you life worrying about when and how or.....  you can simply live your life. 

We will die when we die, the question is -- will you live, while you live?

Mike

[Tonny2]

           ojo          Hello Calvin...I started treatment in January 1995, I asked the ID doctor, how long would I live, he told me around two years. I went back home and get in bed, I was in bed for four days, feeling sorry for myself. At the fifth day, I recalled what the doctor said to me, "around two more years", and I realized that I was wasting my time, I already wasted four days of those two years I was supposed to live, so, I got uot of bed, took a shower, went to see my boss to let him know I was going to be back at work the following day, so I did, twenty two years later, I'm still here, even though I lived with AIDS those first five years after my DX due to treatment failure, so, I can only share my story with you, hoping that everybody who read me, understand that there is life after an HIV dx, and I don't mean to "suck it up" or "get over with", I mean, we have to learn to live with this bug, the meds will take control of it so we can take back control of our lives if we want to keep living a happier life...who would've thought that I would become a grand uncle and not just one baby, six grand nieces and nephews, waiting for the seventh in August, and yes, I will be here to welcome him/her...best of luck...cyber hugs on your way          ojo

[CalvinC]

Thanks to all for your replies and much needed perspectives. I suppose that much of the time -- actually, almost all the time -- I don't think about my status. And if I do, it's sort of like white noise. The hospice thing was perhaps a necessary jolt, only in that it reminded me that I've been fortunate and that I need to take care not to "coast." I'm not depressed at all that I'm hiv, though there are still some medical unknowns. (I'm blessed, too, to have the best medical team in the country, and that helps. I love Canada!)

Be well

Cal

[leatherman]

The hospice thing was perhaps a necessary jolt, only in that it reminded me that I've been fortunate and that I need to take care not to "coast."

while I'm mainly a South Carolina/North Carolina and USA advocate, I'm going to bet Canada has some similar problems. Here in the States, about 1/3 of all people diagnosed with HIV are diagnosed when they have presented at a hospital (and not at a testing center). This means many of them have some sort of "symptoms" and many are already at the advanced HIV stage (i.e. AIDS). While modern meds are incredibly good, they can't compensate for everything. Some people are simply diagnosed too late. In the Southern US states about 27% of those diagnosed with AIDS die within 5 years or less - and much of that is because of late diagnosis. So actually yes, there is still is a number of people who die from AIDS, but those deaths are attributable to late diagnosis and not adhering to medications (because of stigma, poverty, etc)

however, I am surprised that an AIDS hospice would still be in operation as the death rate from AIDS is so very low - thanks to the meds. So I did some research and wondered what agency you were referring to since the Casey House has transformed into a hospital and the Fife House has transformed into a housing agency.

[CaveyUK]

So I did some research and wondered what agency you were referring to since the Casey House has transformed into a hospital

Yeah, I've just done a google too and I think this is where the misunderstanding may have happened. The original Toronto AIDS hospice has now expanded but is now a 'hospital' focused more on HIV services to support people from diagnosis onwards, rather than on hospice services.

In terms of the OP's question - there is no way of knowing what your lifespan will be, and there are a million things that can finish you off other than HIV. What we do know is that modern HIV drugs can suppress the virus, and the latest projections are that someone who has a healthy lifestyle and is adherent to the meds can expect to live a 'normal' lifespan. What 'normal' means is different for everyone of course.

It's really pointless worrying about what may or may not happen years from now. I mean, we could get all 'survivalist' and dedicate our lives to worrying about the zombie apocalypse and work night and day to build underground bunkers at the bottom of our gardens but the energy would be wasted when there is a higher likelihood of dying from tripping and falling down the stairs. Don't expend all your energy worrying about dying from HIV when in all likelihood you will not die as a direct result of it. Just stay adherent to your meds and enjoy your life.

We are very lucky that nowadays HIV is a 'chronic condition' rather than the 'terminal illness' it once was.