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HIV Life >> Living With HIV

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Survival Time
      #193943 - 06/01/06 10:10 AM

I have come to realize that posting an average survival time of thirteen years for people on meds with clinical aids was misunderstood by many of you. Let me qualify that post.

First the average describes survival for people with clinically defined AIDS, i.e viral loads greater than 500K, CD4 less than 200 or a history of an AIDS defining condition such as PCP, MAC, CMV, lymphoma, etc.

Second, the average describes people who have died in the measurement period, the last 12 months. The average survival time is constantly increasing due to advances in treatment. You must not ever consider an average as applying to your future expected survival.

Third, most of those dying were treated before the advent of HAART or protease inhibitors, many were on AZT monotherapy which has been shown to accelerate the course of the disease.

Fourth, averages describe history, they do not predict the future. Most predictive models show increasing life expectancy after the advent of clinical AIDS. However predictive models include a lot of variables, which are at controversy among researchers; these predictive models must be taken with a grain of salt. For those of you with a familiarity with statistics, averages measure the center of a distribution of observed variables. Around that center, the actual numbers vary greatly. Almost no one will experience the average exacly, some will live longer and some will live less time. However, the shape of the distribution in the case of survivability is skewed to the right, meaning that the average is greatly effected by those who die earlier, for whatever reason. Most people live a great deal longer than thirteen years.

Fourth, even with the increase of heart disease and cancer among long term survivors of clinical AIDS, research is finding ways to successfully treat these conditions and prolong life.

Fifth, if you set a limit to your survival, it will become a self-fulfilling prophecy. A young man in a support group I was in during the late 90's was told by his doctor he would live five years. That young man took that prediction to heart and five years later, nearly to the day, he died.

And finally, the key to surving clinical AIDS is and alway has been a good mental attitude. The best way to gain that attitude is learn to live in the moment. As is said in AA and NA, "carpe diem," seize the day.

--------------------
Life is a river.
Carpe diem.

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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Survival Time new
      #193946 - 06/01/06 10:23 AM

Good post....see how statistics do a number on our heads!!!!
I too was a (not so young) man in a support group and figured by all the statistics at the time that I had at least two years left before I would develop AIDS and that I would be dead in four. That was in 1990.

--------------------
6 ft tall poz bear in Philadelphia

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Survival Time new
      #193949 - 06/01/06 10:47 AM

Thanks, Bear.

I forget that most people misinterpret statistics, even researchers. For instance for years, medical researchers were misusing the chi square distribution to predict the efficacy of medicines, resulting in highly skewed predictive results. This misuse was only discovered a few years ago and has since been corrected.

The caveat with statistics is that they must be evaluated in light of experience and since experience lies in the future, the statistics are always changing.

I deeply apologize for sharing what I thought was good news. I am nonetheless shocked that many people with HIV/AIDS have fallen into the trap of believing that HIV is not a serious condition treated with dangerously powerful drugs or that people do not still die every die in the US from AIDS.

Almost no one on this board has witnessed an AIDS death. I have sat by countless beds as people died horrifying deaths from AIDS. AIDS is a serious disease and prevention is still the best cure. The drugs prolong life, they do not cure AIDS.

Practicing safe sex every time, all the time is the best way to stop this disease in its tracks. We in the US should be ashamed that we do not teach our sexually active youth about the techniques of safe sex, but rather counsel abstinence and monogamy. Hands up any of you who were abstinent or monogamous during your teens and twenties. Oh I forget that this is a statistically biased group and our results will be highly skewed. See how statistics must be evaluated?

--------------------
Life is a river.
Carpe diem.

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posintherockies
Regular

Reged: 04/06/06
Posts: 36
Loc: Northern Colorado
Re: Survival Time new
      #193956 - 06/01/06 12:05 PM

I have come to believe that in life it's all about attitude. That helped me get clean and sober over thirteen years ago, got me through major financial setbacks and now is helping me deal with having AIDS. I made a decision a few months ago after being diagnosed last Christmas that I was going to live, not just survive. With a strong faith and a lot of hope and putting one foot in front of the other that is coming to fruition. I personally want to thank you for your posts and I actually bought the book Hero with a Thousand Faces based on your previous post. AWESOME BOOK!!!

--------------------
It feels so good when you let go of all the drama in your life!!!!!!

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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Survival Time new
      #193958 - 06/01/06 12:09 PM

Charles..... I know that watching the AIDS special on TV was painful for you. It brought back a lot of memories for me too. Not good ones. Friends lying in hospital beds......funerals.
What can I say...... i try to have good memories about my friends who have died.....and not remember their DEATH.

--------------------
6 ft tall poz bear in Philadelphia

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Survival Time new
      #193971 - 06/01/06 01:07 PM

Yes, Bear, those first years of the AIDS pandemic were frightening days. No one can really know the terror, the sense of isolation and betrayal, or the anger that permeated those days, unless you were there.

The Frontline special did a fairly good job of capturing those days, but for me those days will always live in my memories of the weekly obituary pictures in the San Francisco Bay Area Reporter during the 90's. Page after page with four columns each of pictures with the brief details of each life. Those days will also live for me in the garage sales in the Castro, as objects that had been the cherished possessions of the dead were tagged and sold on the sidewalks.

I had moved to San Francisco in the misguided notion that I could get away from the tragedy of my friends dying in Atlanta, after spending years hiding out in a mountain cabin and drinking myself into oblivion, only to land in what seemed like Ground Zero of the AIDS epidemic.

I remain angry and suspicious from those days and I am not inclined to change, although I am mellowing over the years. Still I find myself often angry at straight people and at god, who seemed to abandon us in those days, which were not really all that long ago.

My young HIV specialist does not know who Selma Dritz was nor has he ever heard of Randy Shilts. I went to Randy's funeral at Glide Memorial Baptist, where Cecil Williams gave the eulogy, in a state of shock because I never thought in those days I would out live Randy. My HIV doctor in The City was Selma's assistant during those first few months of the dawning realization that an epidemic was in the works.

Still people get this thing, this HIV, this AIDS. Kurosawa made a film in which a Japanese soldier, a survivor of WWII, is confronted by rank upon rank of dead Japanese soldiers. His guilt at his survival mirrors mine. Why above all the others did I survive? I partied as much, I drank as much, I did as much coke, I fucked as much, as anyone who died. Yet here I am 21 years later wondering why I survived. Likely it was only dumb luck, how cruel can a god be to leave me standing among the heaped bodies of the dead, a witness to the carnage for the remainder of my life, doomed to tell a story that increasingly no one wants to hear.

Perhaps, I have lived too long, but the decision to go home is not mine, not yet.

Thanks for listening, these are very hard days for me.

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Survival Time new
      #194002 - 06/01/06 08:55 PM

Charles, I am going to say this only once, maybe twice for you. I am not an intellectual who over analyses things. I see things in a very simple way. Pretty much black and white. I look at the world thru a childs eyes and I never want to change that. I want you to quit thinking of all that has happened and look at what is happening. The past is the past and the hurt will always be there for you to go and find. Your friends, your loved ones are gone. They fought and they died. Some faught and some lived, as you did. Carrying the message to us about the legacy is not always the most healthy way to live. Neither is a WWII vet retelling old war stories the rest of his life as the clock keeps ticking. Do you understand? I have very little life experience living with HIV. However, I do not reminise what it was like to be wreckless and carefree anymore. I look forward to today and today and then today again. The only comfortable place for me is now, not then, not when. You know this, you have lived a great life and if it were to end tomorrow, dont have regrets. Get these worked out my friend. I am planting a very wet kiss on your mouth as I hug you and whisper in your ear, "I love you my friend and I am here for you whenver you need me."

Squash Blossom

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DanielMark
Expert

Reged: 06/06/04
Posts: 120
Loc: Ottawa Canada
Pain in inevitable; suffering is optional new
      #194058 - 06/02/06 06:26 AM

"Yet here I am 21 years later wondering why I survived. Likely it was only dumb luck, how cruel can a god be to leave me standing among the heaped bodies of the dead, a witness to the carnage for the remainder of my life, doomed to tell a story that increasingly no one wants to hear."

As I was reading this, I was thinking along the same lines as what Eric posted. Why are you living in past times? Why not look at how much things have improved for we Poz people and thank God for that, instead of blaming him for you still being here like it was some kind of burden.

I understand survivor guilt. I'm a long-term survivor too, ScotCharles. I would really urge you to seek counselling to get past this grief. Yes the end will come, as it will to all of us Poz or not. Life is to be lived, not to be endured.

I wish you much more joy in your days.

Daniel

PS: Statistics are only numbers, and they are very often wrong.

--------------------
Follow your honest heart

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Survival Time new
      #194063 - 06/02/06 08:03 AM

As I wrote, my story is one that increasingly people do not want to hear. Perhaps the old men in my support group are the only ones who understand the enduring pain of those days. It is a new day for you, my body is worn done from the meds and struggle, and my mind grows increasingly dim.

As long as you remember to live in the moment, you will endure. Only try to make that enduring count for something more than merely living one more day.

Perhaps, I should not post until I work through this change in my life, as I contemplate disability retirement.



--------------------
Life is a river.
Carpe diem.

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Pain in inevitable; suffering is optional new
      #194065 - 06/02/06 08:11 AM

Honestly, I have always thought you cruel, heartless, and self absorbed. Think about me the next time you are inainely blubbering in an NA meeting and recall what you have written.

How many years of counseling I have been through, just to get to the functionality I have now. I apologize for holding a lamp of reality to your face. It is not time for you to reflect on the past and you are not old enough to have more friends under the earth than above. Only the old men in my support group understand what happenned and I shall in future talk only to them about this.

Sorry, I spoiled your high. I am at the end of things more and more these days, my mind grows dim, my body is worn out from the meds, my lover of 25 years has been given at best five years to live. Jim and I have to think of enjoying as much of what is left to us as we can. This is none of your concern and since I have seriously been contemplating never posting here again, you have firmed my resolve in that regard.

--------------------
Life is a river.
Carpe diem.

Edited by ScotCharles (06/02/06 08:18 AM)

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DanielMark
Expert

Reged: 06/06/04
Posts: 120
Loc: Ottawa Canada
Re: Survival Time new
      #194066 - 06/02/06 08:16 AM

Sorry if I gave you the impression that your pass losses are of no importance, ScotCharles. That certainly wasn't my intent.

Maybe I'm wrong, but I got the impression the past is hindering your present.

My apologies if I got things mixed up. (Wouldn't be the first time.)

--------------------
Follow your honest heart

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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Survival Time new
      #194074 - 06/02/06 10:00 AM

Guys Guys......support groups often get to painful places. Charles obviously has some very raw exposed nerves right now. He needs hugs. His comment that he hopes you newbies to HIV will remember what others went through before you, should not be taken lightly. Because the AGE of AIDS is not over. You newbies have to learn from us old veterans so you can carry on and tell the world what really happened. Telling us in effect to forget it and move on is totally ridiculous. We know today is where we are at but at times we NEED to remember the past. Our concern for Charles is genuine.....we want him to feel better. If our words make him angry, thats ok. We still want him to feel better.
I can try to compare Vietnam to Iraq....and believe me I can.....but noone wants to hear it. FOR EXAMPLE.


--------------------
6 ft tall poz bear in Philadelphia

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Survival Time new
      #194095 - 06/02/06 11:32 AM

I speak only for myself and do not represent the group. I am very greatful for those who have chosen to be here and help me understand what happened. I was a young gay boy of 14 when I saw my lifestyle being persecuted. I saw my life as being gay smashed. I saw thousands of people whom I would have loved to have been with die. I saw friends I knew mysteriously die without reason. How could we forget? Everyone has left an indelable mark on me and sometimes its not a place I like to stay for to long. Chuck, if you are not benefiting from the boards, don't hurt yourself by staying. You will be missed and you will leave a hole here in all of our lives.. I dont know how to help you. I don't know if I ever will....

Love

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Survival Time new
      #194122 - 06/02/06 01:06 PM

Nor do I know how to help you, Eric. I never did. Good luck in future, yours will be a vey hard road and I will remember you.

Goodbye

--------------------
Life is a river.
Carpe diem.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Survival Time new
      #194147 - 06/02/06 03:01 PM

I guess we could just say that the years between us can never bring us together in a way that I would have liked... I wish you well and happyness..

Squash Blossom

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