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Author Topic: Life expectancy after AIDS  (Read 9080 times)

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Offline mamaangie

  • Member
  • Posts: 13
Life expectancy after AIDS
« on: October 05, 2007, 12:25:59 PM »
Hi all. This is my first time posting. I was diagnosed HIV+ on Aug. 27, '07 and found out it was AIDS on Aug 30, '07. My CD4 count was 6 and viral load of over 500,000. Started meds on Sept. 13, '07. Had to go to the hospital on Sept. 24, and I was there for 7 days. I am scared to be optimistic about living a long time. Actually, I am just scared. I have read many, many stories on long life with HIV, but not about anyone whose CD4 got down to below 200. Any of you long timers got a story for me? I would really appreciate it. Thanks. Angie in WV

Offline leatherman

  • Member
  • Posts: 6,269
  • Google and HIV meds are Your Friends
Re: Life expectancy after AIDS
« Reply #1 on: October 05, 2007, 01:55:51 PM »
Welcome! You've come to a good place and there'll be plenty of people after me to tell you a ton of things you should know; but let me first tell you something to ease some of your current fears.

Almost 10 yrs ago (it will be in Mar), I was in the hospital with a VL of 490,000, only 2 t-cells, and PCP pneumonia (this was my second time in a two yr period being this sick and in the hospital). Although that was a rough time, and the meds back then weren't as good as the ones today, I struggled through and things got better. Now, nearly a decade later, my tcells are about 250 and my viral load has hovered near "undetectable" for nearly 3 years. And I'm actually healthier than I've ever been in the last 15 yrs.!

At first, I used to think I wouldn't live to be 35. Then I wasn't certain if I'd make it to 40. I felt pretty good about turning 45. And now I'm actually thinking I could make it to 65!  ;D

The only piece of advice I would give you is to always stay compliant to taking your meds. I learned the hard way and that's how I ended up in the hospital that second time.  ;)

Glad you found these forums, and I'm sure you'll find all the answers you need.

mikie
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: Life expectancy after AIDS
« Reply #2 on: October 05, 2007, 02:29:15 PM »
My cd4's were below 200 when diagnosed 14 years ago (probably infected 19 years ago, give or take).  Mine are currently over 1,000 but keep in mind I went for the first decade before breaking 400.  Mine also were not as low as yours currently were when diagnosed, they were still in the 100's, but still current treatments available to you are beyond what anyone had in the early 90's.  Always keep that last bit in mind.

There are many others on this forum who have recovered from quite low numbers upon diagnosis, but you should be aware that you will have to work very hard the first year or two to get them into a safer zone.
"Iíve slept with enough men to know that Iím not gay"

Offline Dachshund

  • Member
  • Posts: 5,968
Re: Life expectancy after AIDS
« Reply #3 on: October 05, 2007, 02:59:26 PM »
 By all indications I probably was infected sometime in the early 80's. I lived in denial for the next ten years or so until Aids decided I should take notice. My counts when I became ill were cd4's, I think about eight, with a viral load of 650,000. Fast forward to 2007. I'm 55, work fulltime and really can't complain. You will read stories of many, many, people that have rebounded quite dramatically from a a situation just like yours. Through treatment and most importantly adherence you should see dramatic results. I know it's easy to say and there is no doubt it can be an emotional roller coaster, but your focus should be on the now and getting yourself healthy. I speak from experience when I tell you the future will be here faster than you can say H-I-V. I'll even go out on a limb and tell you, you can plan on that.

Good luck,
Hal

Offline megasept

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  • Posts: 478
  • Steven here...
Re: Life expectancy after AIDS
« Reply #4 on: October 05, 2007, 06:35:03 PM »
Hi all. This is my first time posting. I was diagnosed HIV+ on Aug. 27, '07 and found out it was AIDS on Aug 30, '07. My CD4 count was 6 and viral load of over 500,000. Started meds on Sept. 13, '07. Had to go to the hospital on Sept. 24, and I was there for 7 days. I am scared to be optimistic about living a long time. Actually, I am just scared. I have read many, many stories on long life with HIV, but not about anyone whose CD4 got down to below 200. Any of you long timers got a story for me? I would really appreciate it. Thanks. Angie in WV

Welcome, Angie!

"Scared to be optimistic"?
Being optimistic while facing the truth is a wonderful condition that will serve you well. Don't try to "cure" a positive attitude.
Nitty-gritty:

I have a friend on a new treatment (drug trial). He's POZ 25 years and has had an AIDS diagnosis about 20 years. He just told me his CD4 count tripled to 11, probably due to the meds (they brought his massive VL down low, maybe to undetectible). So, you can live many many years with 4 T-cells, as he did, or 10 or 90 or 580. I am not making light of it, because the thought of going below 200 scares me too, but it does relieve some of the worry. Some portion of your immunity is still working, and that is what you need to encourage! Good Health!

 8) -megasept
« Last Edit: October 05, 2007, 06:40:01 PM by megasept »

Offline mamaangie

  • Member
  • Posts: 13
Re: Life expectancy after AIDS
« Reply #5 on: October 07, 2007, 09:39:47 AM »
Thanks all. These stories have been extremely encouraging. The support in here is awsome. Have a great day.
Angie in WV

Offline hudstar

  • Member
  • Posts: 130
  • 2010
Re: Life expectancy after AIDS
« Reply #6 on: October 07, 2007, 01:21:02 PM »
20 years poz. I sit on a count of 360 with an undetectable viral load. No problems other than occasional fatigue. I think optimism is a healthy state of mind for anyones well being, poz or neg. As for life expectancy after AIDS, well I'm still kicking after I survived AIDS related Large Celled Non-Hodgkins Lymphoma. I guess that meant I was in an AIDS category, I didn't listen to that word, cancer was my main concern. My cell count and viral load never waivered during that time.  ;)
diagnosed 1988
POZ personals - hudster

Offline J.R.E.

  • Member
  • Posts: 7,212
  • Joined Dec-2003 Living positive, since 1985.
Re: Life expectancy after AIDS
« Reply #7 on: October 07, 2007, 07:00:38 PM »
Hello,

I've been HIV positive for 22 years. I was diagnosed positive in 1985, and received my Aids diagnosis in October of 2003. ( Even though that diagnosis could have been at least 18 months prior to October of 03.

I also stated meds ( first time) with a t-cell count of 16 and a viral load over 500,000. It will be 4 years this coming October 24,07 , that I started on meds, and it hasn't been easy, but I am here !

The last time I was in the hospital was September 26,03, for pneumonia. I have not been in the hospital since, knock on wood !

Overall, things have been going fairly well. Constant neuropathy, tinnitus, A bit of a gut on me, and occasional fatigue, otherwise, I still work full time, hope to for as long as possible. I also agree with Hudstar, that "optimism is a healthy state of mind for anyones well being, poz or neg" And. just to add, one needs to have that support base.


Take care-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,971
Re: Life expectancy after AIDS
« Reply #8 on: October 07, 2007, 08:10:25 PM »
Hey Mama:

I got an AIDS diagnosis in '94.  I had the wasting syndrome and a t-cell count of four.  When they had viral load testing in my area, my first vl was 1.5 million. 

Tomorrow I start a new part-time job.  It was a long-ass haul, very long and emotional and physically draining.  But you can make it.  I have found with me that my emotions play a very large part of my physical health.  Tomorrow will be one month of being smoke-free for me.  That right there is an accomplishment-I was a two pack a day smoker.  So I'm helping myself, step by step. 

Don't give up hope.  We're here and you're still here.  There will be many more tomorrows. ;)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Life expectancy after AIDS
« Reply #9 on: October 09, 2007, 02:49:39 AM »
Why not just "expect to live forever" It works for me.
Positive since 1985

Offline ubotts

  • Member
  • Posts: 347
Re: Life expectancy after AIDS
« Reply #10 on: October 21, 2007, 12:18:59 AM »
HI,
I was diagnosed in 1987, didn't take meds till 2002..

I was afraid of what the meds did to my ex lover who died of aids.

At that time there was only azt out there..And i saw what it did to my lover
and I wasn't gonna go there..

One day..16 yrs later..I felt like crap..I knew something was definitely wrong with me.
So I went to the doctors..

MY TCELLS were 27 viral load was sky high..
I then started meds.
Had no choice..

My tcells went up and over 200..It seems I hover around the 200's and once in a blue
moon, I get up past 300..MY viral load is undetectable.. :) and has stayed that way for years...........

Just go with what you feel..That's what I did..
I am feeling good no matter what my numbers say....

Hell I am still here 21yrs later..

Every day I wake up..as long as you wake up, ya keep on moving..

                                        The mind is a powerful tool.. ;)


Think of the glass as half full never half empty..

If you have a positive attitude it helps...

I did not
 wake up every day and say..OMG I have Hiv or aids..

I wake up like everyone else, ..make my coffee, do whatever needs to be done,
and always take my meds....

Live love and laugh...that will keep ya young and keep your mind healthy.. ;)

Hope I helped in some small way.. :)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline wishihadacat

  • Member
  • Posts: 220
    • Therainstorm.com
Re: Life expectancy after AIDS
« Reply #11 on: October 21, 2007, 09:19:40 AM »
Angie, there is still much to be learned about the science of HIV, but as the posts in this thread show, you have friends who've been living with very low CD4 counts for decades.   ;)
« Last Edit: October 21, 2007, 09:22:37 AM by wishihadacat »
Your name here  X_______________

Offline bfreak

  • Member
  • Posts: 4
Re: Life expectancy after AIDS
« Reply #12 on: October 21, 2007, 02:03:04 PM »
Oh boy, Mama, what a loaded question.   ;D In reality, none of us know if we were/are going to live a long life.  For all I know, my demise may be scheduled for tomorrow.  I hope not, but that's reality.

I've had HIV for 22 years also, 19 yrs with no meds or illness, AIDS since late 2004.  In 2004 I had PCP.  2005 was a Hell of a year.  My CD4 dropped to 8 and my VL was out of this world.  I honestly don;t remember.  June 2005 saw me in the hospital fighting for my life.  Not only had I already had PCP for over a month untreated, but I also had PML (90% mortality rate).  The weird thing with the PML is that all they could do was hit me with HAART and pray.  My body had the job of healing.

I wasn't a stranger to AIDS when I got sick.  My first partner died of it.  The past two years have been fairly tough.  I went from a relatively happy, self-sufficient, partnered man to a sick person who lost absolutely everything but his breath.  I'm in the middle of rebuilding and am finding that all is not lost.  I'm getting a new apartment.  I'm in with Voc Rehab to go back for my Master's.  I've met someone very special.  So all is not over.

I will admit it's only been in the past couple of months that I've been able to see past 50 (I'm nearly 46).  Before that point, I just couldn;t see it.

Get out there and do the best you can for yourself.  It *will* work out in te end.

Alan
Alan

Offline Bucko

  • Member
  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: Life expectancy after AIDS
« Reply #13 on: October 21, 2007, 03:15:05 PM »
At the risk of stating platitudes (which I loathe), I'm gonna suggest that you concentrate of quality and not fixate on quantity when it comes to life.

Make the most of the life you were born to lead, take chances and do things you might never otherwise do. Risk taking could be anything from moving to some place you've always dreamed of to having a child, or might just be loading up on Immoduim and going to a museum. It's not the measure someone outside of your experience might take of your "risk taking", rather pushing your own personal boundaries.

You'll be fine, but don't hide from fate, embrace it.
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Life expectancy after AIDS
« Reply #14 on: October 21, 2007, 05:26:08 PM »
I was diagnosed in 1987, didn't take meds till 2002.

I also didn't start meds till 2002 (tho I was diagnosed in 1988.) I wasn't about to allow toxic chemicals into me no matter how much doctors tried to convince me. The result was I got hit with a whopping viral load and nearly died as a result. Nonetheless, I don't regret my decision.

Although I qualify, I don't live my life according to AIDS statistics. I just live my life as best I can, try not to waste it, and when my time is up it will be up. With or without HIV in us we are all going to die. We always were. Fortunately, no one can predict the future. I see that as both a curse and a blessing.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline mamaangie

  • Member
  • Posts: 13
Re: Life expectancy after AIDS
« Reply #15 on: November 13, 2007, 08:04:35 AM »
Hi Alan,
Sorry it took me so long to respond. I've been fighting depression, a lot. But you're reply has touched me more than any other. I am 44, and I am doing a lot better than I was. At least I can stand up now. But, it seems as if there is always some new symptom. Two things have me down more than anything else. My job for one. I do child protective services, at least I was, until my doctor took me out of the field for 6 months. And my boyfriend is the other. I was contemplating breaking up with him before we found out that we have AIDS. Now, I feel terrible guilt about wanting to be away from him. However, in my heart, I know I will eventually have to break up with him, because the relationship causes me a lot of stress that I have a hard time dealing with.
If you don't mind, can I ask about the partner that you had that died? Was he taking medication?
Angela

Oh boy, Mama, what a loaded question.   ;D In reality, none of us know if we were/are going to live a long life.  For all I know, my demise may be scheduled for tomorrow.  I hope not, but that's reality.

I've had HIV for 22 years also, 19 yrs with no meds or illness, AIDS since late 2004.  In 2004 I had PCP.  2005 was a Hell of a year.  My CD4 dropped to 8 and my VL was out of this world.  I honestly don;t remember.  June 2005 saw me in the hospital fighting for my life.  Not only had I already had PCP for over a month untreated, but I also had PML (90% mortality rate).  The weird thing with the PML is that all they could do was hit me with HAART and pray.  My body had the job of healing.

I wasn't a stranger to AIDS when I got sick.  My first partner died of it.  The past two years have been fairly tough.  I went from a relatively happy, self-sufficient, partnered man to a sick person who lost absolutely everything but his breath.  I'm in the middle of rebuilding and am finding that all is not lost.  I'm getting a new apartment.  I'm in with Voc Rehab to go back for my Master's.  I've met someone very special.  So all is not over.

I will admit it's only been in the past couple of months that I've been able to see past 50 (I'm nearly 46).  Before that point, I just couldn;t see it.

Get out there and do the best you can for yourself.  It *will* work out in te end.

Alan


Offline dixieman

  • Member
  • Posts: 889
Re: Life expectancy after AIDS
« Reply #16 on: November 13, 2007, 05:15:37 PM »
1991 my bday gift from my ex... hiv... I used every alternative herb... treatment etc... my lowest cd4 126.... guinea pig for UAB 1917... crixivan was my 1st drug.... from merc... then zerit/kalentra were hell drugs... now on atripila.... cd4 1589 non detectable... 420 friendly! lol take it day by day... keep moving and making the best of every moment!

Offline +PHc

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  • Posts: 5
    • +Conversations in Time.
Re: Life expectancy after AIDS
« Reply #17 on: November 28, 2007, 12:05:22 PM »
Hi,

My lowest T-cell counts were 2 to 6 in 1994 and 1995.   I lived for five years with less than 20 T-cells with no symptoms other than candida and small problems.  That was before they know as much about T-cells as they do now, and did not know that some people could live pretty healthy lives with that indicator looking so bad.  And before viral load was used at all - so I don't know where I was with that.  People use the term longterm survivors sometimes like that is the same as longterm non-progressors, but some of us started out pretty progressed.  Like you my T-cells were already pretty low when I was first diagnosed - in 1991.  Hang in there.  It's complicated, and different bodies respond very differently.  Glad you found out, now, without more time passing without help.  Good luck.  Take good care.

+PHc at +Conversations in Time.
(conversationsintime.blogspot.com)

Offline newbernswiss

  • Member
  • Posts: 260
Re: Life expectancy after AIDS
« Reply #18 on: December 10, 2007, 07:11:11 PM »
Diagnosed with AIDS (CD4 of 30) in 1990. It's 2007 and I'm still here, working my ass off full time. I look at my cd4 count like my age. It's just a number. It's how I feel on the inside that counts.

Offline lipoenvy

  • Member
  • Posts: 61
Re: Life expectancy after AIDS
« Reply #19 on: December 11, 2007, 12:47:26 AM »
Tested positive in 1985 (probably seroconverted in 1982), slid to CD4 count of 18 in 1996 before I started combination therapy.  CD4s now consistently above 400.

The depression and relationship issues sound like good reasons to get the help of a therapist or other professional.  I will offer the observation that HIV+ people break up for all the same reasons that HIV- people do.




Offline DCGUY2007

  • Member
  • Posts: 315
Re: Life expectancy after AIDS
« Reply #20 on: December 11, 2007, 04:13:55 AM »
My ex lovers tcell went down to 7 and that was over 12 years ago. I remember when he was so bad off I had to buy him a cane to help him keep his balance. He has now been living with Hiv for over 21 years. He started meds 12 years ago and started doing better.He no longer has a cane even worked again for a while. He has some health issues but he is still active.

The disease effects people differently. I personally know how depression can be too; but try and Live the best life you can today, learn from the past and plan for the future as best as possible.

Offline achim-martin

  • Member
  • Posts: 43
Re: Life expectancy after AIDS
« Reply #21 on: January 28, 2008, 04:24:52 PM »
Its true, the desease effects people differently. Depending on their age, constitution and if some other illness speeds up the process.
Last night a friend of me died.  :'(
He was 42 years old, diagnosed four years ago with HIV positive (not AIDS yet) Did some treatment for a year and decided to stop to do one of those intermediate medications - start and stop and start and stop. Well, a year ago he got pneumonia, looked terribly bad - one could even see the kaposi luking under his skin. The doctors at the clinic didn't though and he only got treatment for the pneumonia, not the kaposi. Three months later it broke out and he also got treatment against kaposi. But since his cd4 was below 50 and his overall constitution was so bad the chemo did  not really work well. As so many he kept smoking and drinking and now he's dead.

My lover and lifepartner though got it 1996, (poz, not AIDS) Being 33 and having hep A at the time, he started treatment as soon as it was possible for him to do (after cure of hep a) Did the HAART and then after a few years some Interleukin II in addition. We had read the book from Mahlon Johnson, this physician who faught HIV so bravely. It was very encouraging to both of us. Well, he's doing fine today...his figures are better than from a "standard healthy person" as I am, below detection, cd4 above 1000 and all other figures great, even the cholesterol (I envy him for that)  But we worked hard for it. Protein, natural vitamins, no smoking (that was the easiest cause he had never done it before anyway  ;)
So what can one expect? Be honest to yourself, monitor your health closely and try some common sence in improving your overall status, and take your medicine precisely without failing to do so. Be positive in the most positive way one can think and you'll succeed!  keep it up, buddy!

 


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