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Author Topic: Question...  (Read 1634 times)

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Offline d-boy86

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  • Posts: 119
Question...
« on: December 15, 2010, 09:17:48 AM »
Is it really safe to say that a 25 year old diagnosed today could expect to see 70 years of age and beyond? I've been reading articles that state that, but after reading post here from a few members I'm starting to become worrisome all over again  :-[

Offline Nextdoor_guy

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  • Posts: 82
Re: Question...
« Reply #1 on: December 15, 2010, 09:33:47 AM »
: ) i am 25 and been diagnosed at 24...
I don't think this is a way to think. You can die of several other reasons, not even the healthiest people one earth can say that they can live to a certain age.

But if you are concerned about the life with HIV, some studies shown that under treatment, a seropositive person will live just with 5 years less then a "normal" one.

so just take it easy cuz will be a long ride.
and welcome around the forum. it's the best choice u've done.

hugs.
There's too much confusion.

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Question...
« Reply #2 on: December 15, 2010, 10:23:42 AM »
quite possibly, maybe  ;D
(really definite answers, huh? LOL)

Keep in mind, that at a support site, you're probably going to read from more people about problems that they are having - that's just the nature of a support site. Plus, when you reading those stories around here are you really getting the whole picture?

Although a lot of people around here have complaints about longterm side effects and whatnot, a bunch of the people here started off on some of the earliest meds which were less effective and had higher dosage issues. Yet it's years and years later and they're still hanging around. There are quite a few people here who have actually outlived having an AIDS diagnosis, not just HIV+, so that means being hospitalized and probably about to die from an OI, and yet they're still here kicking around 10, 15, 20, 25 years later. If they can do that starting off with no meds or the earliest meds, I don't see what someone today surely wouldn't fare better than that.  ;)

For example, after my friends and partner all died off in the late 80s and early 90s leaving me all alone, I spent many years on those early meds puking my guts out and quite sick. Why I was in the hospital on both my 34th and 36th birthdays being told that PCP (pneumonia) and the AIDS was about to kill me. But those early meds did still did the trick even with the side effects and I haven't been back in the hospital in over 13 years.

Matter of fact, changing to some of the new meds I've actually gotten healthier than I've been in 20 yrs - and that's with getting older. Shoot! I was told I wasn't going to live passed that 36th birthday and now I'm just a couple months away from 49. And if genetics have anything to do with it, I'm afraid I just might live to be 93 like my grandmother who lives alone and even still drives. ;)

Worrying about when you will die only does two things: 1) drives you to the grave faster and 2) makes you not enjoy the life your actually living. So take the meds when it's time (cause that's the only thing that going to stop the HIV from turning into AIDS which will be the death of you); deal with any side effects that come along; and get out there and enjoy life. ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline d-boy86

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  • Posts: 119
Re: Question...
« Reply #3 on: December 15, 2010, 11:34:47 AM »
Thanks! That was an amazing response. If you don't mind me asking -- how long have you been positive?

Offline wolfter

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Re: Question...
« Reply #4 on: December 15, 2010, 12:34:17 PM »
Absolutely.  I was younger than you when I was diagnosed and I'm now almost 45.  And that was when it was considered a death sentence.  So yes, look forward to growing old and plan accordingly.  We're probably one of the few segments of society that actually look forward to aging.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Question...
« Reply #5 on: December 15, 2010, 12:54:39 PM »
If you don't mind me asking -- how long have you been positive?
probably infected in 1984 when I was 25. Diagnosed poz when I was 30 on 12/26/1992 (merry f-ing late Christmas gift that was LOL Hey! That means I have an anniversary coming up in a couple of weeks. Wow! 18 years ago I was told by the city health dpt after taking the anonymous test and waiting two weeks.). By my bday in March 93, my partner and I were seeing an ID doc and were diagnosed with AIDS (no viral load test back then; but I had something like 12 cd4s). while I went onto AZT monotherapy, my partner was sicker than I and he passed away 18 months.

Back then when I tested poz, they had just started using AZT. For most people, scratch that, for nearly everyone, getting a diagnosis back then really did mean about 18 months and you were dead. That's what literally happened to all the friends I had. I guess I just got lucky not being sick until there was at least the one treatment.

Of course for many years I didn't expect to live and was surprised to survive the 2 bouts in the hospital. I surprised the doctors too. LOL It took me a while to get past that fear that the aids was going to do me in - especially while I was still so sickly, barely recovering, and depressed from losing my friends, my partner, and the life I had known. But every so often a new med would come out, and my doctor was able to change up my regimen (which was a a high at one time of 28 pills and tablespoons of meds a day, and is now a low 3 pills a day WooHoo!), and I would improve some. After a while (like about a decade LOL) I realized I wasn't dying and I even fell in love again!

Sadly though after about 10 yrs together, foolishly we had let my second partner go untested (and untreated) too long and found out he had AIDS and non-hodgkins lymphoma. After just 60 quick days in the hospital, he came home for 9 days before passing away (just a couple yrs ago in 2008) almost 14 yrs to the date of when I lost my first partner. The moral to that part of my story is that untested, untreated HIV is still just as deadly in 2008 as it was in 1994.

so as you can see from my story, I know what not treating HIV means - that people die. I've also seen that even the "bad" meds can be helpful. What I've also seen is that the newer meds have led to people not dying (I know that sounds obvious but in 1990 things were a lot different and dying was the norm), people living longer, and now people experiencing fewer and fewer side effects. (Heck it's not even the worst thing dealing with some side effects especially when compared against the alternative of simply being dead.)

We're probably one of the few segments of society that actually look forward to aging.
No lie man! ;D Having been in a hospital on two birthdays with doctors making me contact my family to get there quick as I might not live through the night, I'm freaking ecstatic every year I get older. ;D I mean getting older, no matter what aches and pains, is a helluva lot better than being dead-er. LOL
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Question...
« Reply #6 on: December 15, 2010, 01:18:19 PM »
didanosine (ddI) was FDA approved in October 1991 and after that date it was standard to put a patient on both AZT (which by then they'd lowered the dose from the 1987 level) and ddI.  I find it odd that you were only put on AZT in 1993.
"Iíve slept with enough men to know that Iím not gay"

Offline d-boy86

  • Member
  • Posts: 119
Re: Question...
« Reply #7 on: December 15, 2010, 01:35:28 PM »
You guys are truly a blessing. I think I've just found my new home. I still haven't told my parents/family about my diagnoses yet. Three months will make it a year. Reason being, my mom has lost a lot of people due to the disease. So I will wait until I am at my 20 or 25 year mark to tell her. Basically proving to her that it is no longer a death sentence. It's kind of hard convincing someone who has lost everyone around her to the illness that is no longer a death sentence when that is all that she knows of it.  :-[

Offline metekrop

  • Member
  • Posts: 354
Re: Question...
« Reply #8 on: December 15, 2010, 01:37:45 PM »
Thanks! That was an amazing response. If you don't mind me asking -- how long have you been positive?

May about 20 years. ;)
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797, UD

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Question...
« Reply #9 on: December 15, 2010, 02:08:24 PM »
I find it odd that you were only put on AZT in 1993.
you often question the treatment regimens I was put on in the early 90's - perhaps that was my "bad" luck for being in a little city in Ohio with only one homophobic ID doctor who was not a specialist in HIV (and who was slowly but surely becoming an alcoholic as he tried to deal with the death of all of his patients). Unfortunately in the earlier years a lot of people didn't have access to the latest and greatest treatments, training, or doctors. Although I eventually did take ddI (the great big white tablets and was even on the Videx EC form of it until just last year), I never had a regimen of ddI and AZT. As is often mentioned here. each of us seem to have a different HIV experience than others.

As AZT was only approved in 1990 it was still very much in use throughout the States in the early years of the 90's:
Quote
AZT was subsequently approved as a preventive treatment in 1990. It was initially administered in much higher dosages than today, typically 400 mg every four hours (even at night). However, the unavailability at that time of alternatives to treat AIDS affected the risk/benefit ratio, with the certain toxicity of HIV infection outweighing the risk of drug toxicity. One of AZT's side effects is anemia, a common complaint in early trials.
. . .
During the period from 1994 to 1999 when this was the primary form of prevention of mother-to-child HIV transmission, AZT prophylaxis prevented more than 1000 infant HIV infections
http://en.wikipedia.org/wiki/AZT

Unforuntately even today, many still have issues for optimal HIV treatment due to living in rural areas vs. urban areas because of having access to fewer doctors, longer distances to travel, and doctors with less qualifications in strictly HIV treatment.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Miss Philicia

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  • Posts: 24,142
  • celebrity poster, faker & poser
Re: Question...
« Reply #10 on: December 15, 2010, 04:20:26 PM »
LA Times U.S. Approves Sale of AZT to AIDS Patients, March 21, 1987

the later date you quote below was for preventive treatment, meaning those not yet progressed to AIDS, so in fact it was in use for five years before your (AIDS, not HIV) diagnosis in 1993, the same year as my own AIDS diagnosis.

For what it's worth I was in no way questioning the use of AZT in 1993, as I was taking it myself, I was merely questioning using it as monotherapy at that point.  Not sure why you're ballistically defensive about my initial question.
« Last Edit: December 15, 2010, 04:23:40 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline d-boy86

  • Member
  • Posts: 119
Re: Question...
« Reply #11 on: December 15, 2010, 04:24:30 PM »
Miss Philicia I don't think it's important to know when and why he received treatment when he did.  It's a blessing within itself that he he is still here 18 years later after receiving an AIDS diagnoses.

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Question...
« Reply #12 on: December 15, 2010, 04:57:20 PM »
the later date you quote below was for preventive treatment, meaning those not yet progressed to AIDS, so in fact it was in use for five years before your (AIDS, not HIV) diagnosis in 1993, the same year as my own AIDS diagnosis.
and just what difference does any of this make to d-boy? Does the fact that you think it's odd I was on AZT monotherapy in 93 change my comments to d-boy? Does it change the actual experience that I went through taking that crap for 9 months till I had anemia and that I stopped it as it seemed it was killing me faster than Randy was dying? Really, this discussion would be better over in the LTS forum or via PMs, if you'd like to know more about my treatment in the early years.

I guess you should be thankful that you lived so close to an epicenter of the epidemic and were able to get better treatment and doctors instead of living in an county in Ohio where less than 150 people had AIDS. Why even now Ohio (17129) has had less than half (44%) the cumulative cases that PA (38217) has had and not even 10% (8%) of the cases seen in NY. It's no wonder that Ohio had less than optimal care compared to the hotbeds of infection in those two states. If I hadn't been so poor or so sick and near death maybe I could have gone to NY and have gotten better treatment.

(thank god I wasn't living down here in rural SC where I live now, back in 93. ROFL Theres only been 15176 cumulative AIDS cases by 08 here. Goodness, right now there's only one doctor treating 3 counties' worth of infected people in my area. LOL)

Although regardless of all that, my treatment seemed to have kept me alive. that nasty AZT monotherapy, that wasn't done any longer in the big city, obviously kept me alive long enough to get to better treatments. Thankfully, besides a little fatigue, and PN (maybe from the ddI or zerit), I don't have any liver, heart, cholesterol, bone density, etc issues either from any of the meds that I've been on. (the joint issues I've had since I was 14) And thankfully during the 6 yrs or so that I've been taking the newer meds of Reyataz/Norvir with either Truvada or Videx, my counts have gone stable after all these years and I'm healthier than I've been in 20 yrs.


edited to add that those numbers are cumulative AIDS cases up to 08. all info from http://statehealthfacts.org
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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