POZ Community Forums
Main Forums => Living With HIV => Topic started by: Blixer on October 18, 2006, 08:00:26 pm
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I've pondered whether to post this or not but here goes anyway.
I know I've read way too much negative stuff about the ultimate outcome for HIV infected indivduals lately. And sometimes that causes me to worry. I know some of you are very good with living in today and not borrowing trouble from tomorrow. I'm not quite there yet. I've always been one that kind of knew, within reason, where my future was going. I took good care of myself and avoided many bad health habits (except for this weakness I have for men). Anway, while browsing through some answers on "The Body" I ran across this question asked in the Ask the Experts.
"Is mortality in +ve HAART treated people (strict adherence, start above cd4 350 etc) likely to converge on the 'normal' or average of people without infection? "
And the response from Dr. Holodniy was: "In your scenario, the likelihood of an AIDS associated death in someone starting treatment above 350 CD4 cells is very, very low. Deaths from other causes (cancer, heart disease, etc) are now becoming the leading cause of death in HIV infected."
Since, in a round about way, I kind of got the negative stuff started with the age deal I thougth this was very encouraging. There is enough bad stuff going on in the world all around us so sometimes it is just great to step back and see that there is a lot of hope for the future in many cases.
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Hiya David....
I had my fill of the 20, 30, 40 and 50 prognosis thread... But it still has me.....
The Novel is just not finished yet... It sorta sucks being the ones making history....
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Hey David,
I wanted to thank you for sharing this information with us. There are plenty of physical and mental rewards with positive news.
Make the BEST of each Day!
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Hello Blixer and Eric: ;D
The best advice I can offer to both of you is this:
If you continue to try and predict your future based upon the individual experiences of some members of these forums (no matter how articulate or forceful they may be). . . . .
If you continue to search for some sort of guaranteed assurance as to your future based upon "this study or that study", based upon whether you can differentiate the outcome from your reality (be it age, date of diagnosis, or whatever the most convenient terms may be at the time). . . .
If you continue to try and live your lives based upon the endless possibilities you both seem to be trying to eliminate. . . . .
Then you will never be "living with HIV" in my humble opinion.
You are both HIV +, whether you elect to "live" with that is something you will both have to come to on your own terms.
The struggles are real, the challenges are significant, the choices are sometimes not of your own making.
The one thing you both do have control over is this: You can acknowledge the fact that you are both HIV+ and let go of that, but refuse to let go of anything else, or you can continue to struggle for some unattainable level of guarantee that simply isn't there.
I'm not trying to be cruel or dismissive, I'm simply trying to define the important issues and maybe give an opportunity to shed baggage that isn't going to help you in any way.
After all these years, today I'm doing well. Tomorrow? Who knows. But I'd rather live with the success of today than the fear of the imagined tomorrow.
I wish you both the best.
RAB
(Who's age is 49, who's years of "living with" are more than 2 decades, who's tomorrow is uncertain, but it is what it is.)
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Wise words from a wise man, Rocky. You nailed it, as usual.......
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Rocky,
Ditto to what you said!
HUGS,
Mark
Who still thinks Rocky's nickname should be Studly - for obvious (at least at times) reasons.
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Of course no one can know the future but it needs to be acknowledged that the situation has changed in 20 years. Being told you have HIV in 2006 is not the same as in 1986. In 1994 my I.D. specialist told me to apply for disability and get my affairs in order. I didn't follow his recommendation but I know from the way my labs and body were going I that if protease inhibitors had not been developed I wouldn't be here.
There are practical considerations for knowing that you are going to have a short life expectancy versus an indeterminate one. Questions such as how much money should I put into a 401K, should I have children, should I choose a different job are affected by whether you are planning on living for 5 years or 25 years. I've been put in the situation where I didn't contribute a lot to retirement because I didn't think I would make it that long. Now I'm thinking I better makes some changes. I didn't go back to school to get another degree because it seemed like too much stress and it wouldn't be a practical investment of my time. Now I'm reconsidering going back to school.
You can't live your life without planning for the future and you can't assume you're going to live to be 90. You have to look at where you are and where things are headed and chart you course accordingly. That to me is not just "living with HIV" but just plain life.
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On my last visit to the hospital I asked my Dr. what were the chances of developing lymphoma. His answer was: "take your pills, never miss an appointment and do not think about the what ifs..."
Remember HIV is not the only cause of death. People die of other things: aging mainly...
HIV negative people are not immortal.
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This was nice...
If you continue to try and predict your future based upon the individual experiences of some members of these forums (no matter how articulate or forceful they may be). . . . .
If you continue to search for some sort of guaranteed assurance as to your future based upon "this study or that study", based upon whether you can differentiate the outcome from your reality (be it age, date of diagnosis, or whatever the most convenient terms may be at the time). . . .
If you continue to try and live your lives based upon the endless possibilities you both seem to be trying to eliminate. . . . .
Then you will never be "living with HIV" in my humble opinion.
You are both HIV +, whether you elect to "live" with that is something you will both have to come to on your own terms.
The struggles are real, the challenges are significant, the choices are sometimes not of your own making.
The one thing you both do have control over is this: You can acknowledge the fact that you are both HIV+ and let go of that, but refuse to let go of anything else, or you can continue to struggle for some unattainable level of guarantee that simply isn't there.
There are a lot of things to worry about. Finding out how long folks live post-HAART, probably isn't going to change your circumstances one bit. Control what you can and let the chips fall where they may.
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When I was diagnosed on May 31, 2006, 10:45 am, my P.C.P. told me it's highly likely I'll die from a heart attack rather than HIV. When I saw my new I.D. doc on June 1, 2006, I neurotically asked her if I was going to die. She said "of course you're going to die, now stop worrying about how, when or why". Made me stop and think that I have more important things to worry about like trying to get the green peppers in my garden to grow this summer.
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Well, David and Eric I have been struggling with the same question, over and over again for months. I have a sister who is 5 years older than me, she was diagnosed with Breast Cancer five years ago, she was a size DD. They removed her breast and a tumor the size of a grapefruit. She also went through kemo, and radiation. My family was against her having reconstruction, but she is only 41, so I was the only one in her corner. She healthy and happy with a nice C cup. Sorry I digress. My point is that we never know when our time is up, or how we are going to go, we have to make the best of the time we have and surround ourselves with people that we love and trust. We have to take care of ourselves, and plan for a brighter day. If they day does not come, then we have to be prepared for the inevitable. I hope that makes sense. Love, D
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I also had the OMG I am going to die thought when I found out however my father the nurse put it in perspective for me. My brother in law has Chrohns disease at the young age of 21. His body is ravaged and he is so thin he looks anorexic. We have better medication to keep us going with HIV than he has. It is sad to think that I will probably outlive him.
Now more on the death topic- I beat a sarcoma as a teenager that was a 10% survival rate. I would rather have HIV and know that I can take the HAART than have cancer again and wonder if the chemo and radiation will work.
I talked with this great nurse yesterday who gave me the encouragement to live my life, have more children and finish college. We have come so far in ten years with this disease and I cannot wait to see what happens in the next ten years!
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Thank you Rocky, GSO, Clff, Juan, Steve... For me, the answer to a difficult question that really cannot be resolved, was very well attempted and understood here... Thanks for your wisdom, patience and understanding as a few of us try to catch up.. I am very thankful to you guys..
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Some very thought provoking replies! Thanks to everyone who contributed. Some of you have a lot more "experience" with this virus than some of us relative newbies. I'm sure there were lots of questions when you were diagnosed. Maybe even a lot of fear. A year ago HIV was the furthest thing from my mind. Yes, I knew being a gay man that I was at some risk. But I thought I was protecting myself as best I could. Somehow, I drew the short straw. I've known my status for 10 months now. It has brought a clear realization of my mortality. Maybe that was something I should have realized before, but now it is much more real to me. I do know that as time goes by I think about this virus less and less. I can imagine that 10 years down the road I'll look back at my questions of today and think they were somewhat silly. I know that day by day I come to understand this virus a bit more, its impact on my body, and how the meds impact me. In a sense, I'm learning to live all over again. But I also know that I'm much less fearful today than I was that day last January when I sat in my doctor's office and got the news. And I have a much more focused outlook on life. I am thinking about "working till retirement" and I really appreciate what GSO had to say because that is so right. None of us really know when we will die or what we will die from. It can be short sighted to think we won't be around long. We don't know for sure. Lots of things could happen.
So again, I want to thank you all for your replies and if you have a lot more experience than I do, please just be patient with those of us who are still somewhat newbies. Best wishes to you all and much success in all you do!