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Author Topic: recently found out  (Read 4195 times)

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Offline Elkan

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recently found out
« on: April 18, 2013, 07:13:29 PM »
I only found out a week ago and this week has been hell for me. I wasn't so worried in the beginning cuz i always knew it's only a kind of disease. but it's getting worse right now as i am concerned how many years that i might be able to live on :( i am glad to see there are many long-term survivors on this site, can you guys provide more realistic information on how many years people usually live on? i am just 21 y/o :( i'll try to start doing some exercise and keeping my body healthy, but..i don't know if the future is really that bright as the doctor said. :( hope someone would help me out :-[

Offline Jeff G

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Re: recently found out
« Reply #1 on: April 18, 2013, 07:24:58 PM »
Hi Elkan , Im one of those LTS and was just a little older than you when I tested positive . I will be 51 in a few days and going strong , as a matter of fact I feel stronger in some ways even after all this time .

Long term survivor or not we all have many things in common and we all had to go through that I just found out hell ... but I can promise it does get better in time .

Welcome to the forum and look forward to hearing more from you .

Offline Elkan

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Re: recently found out
« Reply #2 on: April 18, 2013, 07:29:13 PM »
Thank you, but my qn is still not answered :(
I am new to this community and I barely know people who are infected. My nurse told me it's quite common to live with meds for 20 plus years but I just don't know if that's true. :(
anyways, thank you for your reply.
also hoping to talk to you guys too! it just feels home when talking to someone in the same situation.

Offline Jeff G

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Re: recently found out
« Reply #3 on: April 18, 2013, 07:40:01 PM »
Um ... I have lived 30 years with the virus and many others have too , thought I made that clear . You are going to be ok and have an excellent shot at living a normal life span if you don't get hit by a bus .  ;) .


Offline WillyWump

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Re: recently found out
« Reply #4 on: April 18, 2013, 08:19:21 PM »
Hi Elk,

I'm only 5 or so years into this, but your doctor is correct, your life span will be near normal provided you stay adherent to your meds once you are on them. There are plenty of LTS walking around living a happy life, like Jeff.

You need to not worry too much (easier said than done I know) but plan on being around for a long long time.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Elkan

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Re: recently found out
« Reply #5 on: April 18, 2013, 08:49:08 PM »
thank you!!! :o

Offline gadawg1979

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Re: recently found out
« Reply #6 on: April 20, 2013, 01:20:01 AM »
Just over a year in here.  Hold on its a wild ride to start but once you get things in line it settles.
Diagnosed March 2012
Initial CD4- 156 VL 200K (started Complera) Genotype test no resistance
First labs on meds CD4- 246 VL 2K Taken after 30 days on Complera
90 Day labs VL 306 No CD4 Drawn
8/21/2012 CD4 474 VL Undetectable (40) %20.6
11/27/2012 CD 4 522 VL Undetectable (40)
2/14/2013 CD 4 464 VL Undetecable (30) 19.6%
6/8/3013 CD 4 528 VL Undetectable (30)
9/24/2013 CD 4 546 VL Undetectable (40)
1/30/2014 CD4 560 VL Undetectable (40) 22 %
6/19/2014 CD4 584 Vl Undetecable (30)

Offline Elkan

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Re: recently found out
« Reply #7 on: April 30, 2013, 12:23:59 AM »
finally going to see the specialist tmr, don't know what's gonna happen to me :( kinda nervous right now

Offline tednlou2

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Re: recently found out
« Reply #8 on: April 30, 2013, 12:59:19 AM »
finally going to see the specialist tmr, don't know what's gonna happen to me :( kinda nervous right now

Glad you're in care.  So many young people get their dx, and then drop out of care.  There are several members here, who have been poz over 20 years, and some 30.  I think there are a few, who put their infections back to the 70's.

All the best on your appointment.  Let us know how it goes.

Offline Elkan

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Re: recently found out
« Reply #9 on: April 30, 2013, 01:02:25 AM »
Thank you ted.
I was just reading some posts in the forum and saw people complaining about their side-effects, the unenduring pain they are suffering, it just scares me :(
I am infected for less than one year, i just hope i am not a rapid progressor :(

Offline jkinatl2

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Re: recently found out
« Reply #10 on: April 30, 2013, 01:18:18 AM »
Hey Elkan!

I teste positive when I was 27. It was 1993, and all the people who went to the clubs with me were dropping like flies. Dropping literally dead. I have no idea, and only a few reasonable guesses why I survived that, survived until 1996 and the "miracle drugs." And I have no real concept why I survived THEM, as the first generation(s) of those drugs were basically field-tested on patients.

But here I am, with mostly internal scars, and on ongoing sense of bafflement about the whole thing.

I am saying this as a preface, and it's not a pronouncement I make lightly - or would have made at all, as recently as five or six years ago.

You are going to be fine.

You will get labs done, get your numbers, get a lot of blood drawn, and then you will wait. Maybe you will need to (or opt to) get on meds now. Maybe you will wait. We have a handful of one pill-a-day combinations, with more looming. Hell, in five years we will likely have pill-a-week, or injection every two weeks (Google Humira for an example.) And by then, a working "cure" might be the next step.

Even if science comes to a crashing halt RIGHT NOW* -- you are still going to be OK.

*note. science is not coming to a crashing halt.


I know that this is tough, this is scary, and the learning curve is temporarily perpendicular. But you can do this. It's no longer baffling why people survive - it's becoming baffling when people diagnosed NOW do not. Throw away all the outdated, obsolete bullshit you have read about HIV.

Read the LESSONS here on this site. First rate, readable, and well written. Also painstakingly researched.

I am not going to say stupid stuff like "don't be scared" and "don't be nervous." HIV is serious shit. But so are a lot of things. You probably do fifty brave things every day without thinking twice about them. You get into a car and drive/ride. You go somewhere public. You/I/we/us, we live on what amounts to an inconsequential planet, orbiting a middle-aged star in a tangential cusp or the arm of one of several loops around one of many million galaxies.

Yet we are here. YOU are here.

And you will be OK.

More importantly, the days you do not feel OK, you will not be truly alone. You've got a treasure chest on this forum full of people who have been (or are) where you have been, who will offer wisdom, advice, strength, hope, and usually at least a little snark to put it all in perspective. PLEASE use this place as the resource that it is. Please listen to the people who offer opinions. Even the prickly ones (and I have been counted among that number.) Often times it's the crusty old battle-axes who will provide the best help.

I do not consider myself a battle-axe, however. So none of that.

There are good people here. And I am certain there are good people where you are as well. We will get through this together.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Elkan

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Re: recently found out
« Reply #11 on: April 30, 2013, 10:57:59 PM »
Hey,
I've been reading your reply again and again, try to understand everything you say. It is truly a bliss for me to have found this site and got all these positive replies from all these kind souls.
I went to the clinic today, I didn't have the chance to see the doctor though. But i had a discussion with the nurse, basically asked her some of the basic things (like medication coverage, side effects of medicine and etc.). She is nice and I feel like I am in good hands. so i got blood drawn today and awaiting for the results to come back in about two weeks time; hopefully i will not need to be on medication just yet. and yeah, good news is that i think i can get my medication covered by my university insurance plan.
I guess I still need some time for me to get back to normal lifestyle so i expect myself will be emotional once awhile. but I really hope and I am really happy that I can go through all these with you guys. I will keep updated here.
Somehow, it really feels like a rebirth. ???

Offline Elkan

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Re: recently found out
« Reply #12 on: April 30, 2013, 10:59:22 PM »
Just over a year in here.  Hold on its a wild ride to start but once you get things in line it settles.

yeah!! I think I am getting better and better. it's been three weeks since then.

Offline mecch

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Re: recently found out
« Reply #13 on: May 01, 2013, 05:04:07 AM »
A person diagnosed today, after a recent infection, and in a situation with access to medical care and treatment, is pretty much expected to live a "normal" life span.
The information you took from the Nurse, about "20 years is common" is INCOMPLETE and does NOT apply to you.
You should expect and plan that HIV will not cut short your reasonable lifespan.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mitch777

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Re: recently found out
« Reply #14 on: May 01, 2013, 09:29:40 AM »
Hi Elkan,

I'm one of the old battle-axes (not crusty) here.
(btw great post jk)
30+ years poz (at age 23).

One thing to keep in mind when reading about others health issues here.
Everyone is different in SO many ways... genetics, age, how long they had been infected (without the life saving meds available), mental health, good or bad health habits, etc., etc.
Also, med side effects can vary but the med options keep growing.
The majority do well with little or no side effects.
It may seem like a high percentage have issues with the meds after reading some of the threads here but remember that those who aren't having med side effects (the vast majority) won't be heard from often or at all on the topic.

As for being emotional...
It's part of being human.
I think you have already witnessed a tablespoon of the bowl full of support available here.
It's a BIG bowl. :)

Sounds like you feel comfortable with your health care providers.
Great to hear!!

Welcome! :)

m.

31 years hiv+ (oct. 2013) with a curtsy.

Offline Elkan

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Re: recently found out
« Reply #15 on: May 11, 2013, 03:58:10 PM »
Immigration stuff really makes me frustrated.
basically im a chinese national studying in canada, I am scared of being expelled everyday and worried about how I am going to stay abroad after my graduation :( argghhh

Offline mecch

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Re: recently found out
« Reply #16 on: May 11, 2013, 09:22:08 PM »
Well, inform yourself.  Get the facts and worry about the real dilemmas, not all the worst case scenarios anyone of us can imagine, frozen in fear from even getting the facts.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Elkan

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Re: recently found out
« Reply #17 on: May 11, 2013, 10:34:06 PM »
Well, inform yourself.  Get the facts and worry about the real dilemmas, not all the worst case scenarios anyone of us can imagine, frozen in fear from even getting the facts.

the case is I can't stay here if the immigration asks me for medical check again..
and it looks it's hard to get work permit in the states nowadays, sad :(

Offline mecch

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Re: recently found out
« Reply #18 on: May 11, 2013, 10:37:58 PM »
Canada would throw you out in the middle of your studies? 

Since I guess most are as ignorant as I am on this topic, can you explain why you don't want to make your life and career back in China, after your studies? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Elkan

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Re: recently found out
« Reply #19 on: May 11, 2013, 10:44:43 PM »
Canada would throw you out in the middle of your studies? 

Since I guess most are as ignorant as I am on this topic, can you explain why you don't want to make your life and career back in China, after your studies?

if they don't ask me for another medical check, i'll be fine until my study ends.

I don't want to go back to China cuz I want to live longer lol, right now there are only 6-8 medication available and they are kinda outdated ones. therefore, they give more serious side effects and once I am adherent to those medications there is nothing i can do. besides, the stigma in china still poses huge discrimination in many places, workplace and health care system, even in CDC itself. :(

my plan is to go to states for graduate school or work, hopefully.

Offline mecch

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Re: recently found out
« Reply #20 on: May 11, 2013, 10:58:44 PM »
Thanks for the clarification.
So Canada would rescind your student visa, in the middle of your studies, if they found out you are HIV+?  Are you sure. Sorry to be a bug.

As for the USA, yes, fabulous higher education. But is it the easiest country to be HIV+?  I think not.  I'd head to a county with pretty flexible immigration regulations about HIV combined with universal health care, if you are thinking of making your career.
« Last Edit: May 11, 2013, 11:01:31 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Elkan

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Re: recently found out
« Reply #21 on: May 11, 2013, 11:09:43 PM »
Thanks for the clarification.
So Canada would rescind your student visa, in the middle of your studies, if they found out you are HIV+?  Are you sure. Sorry to be a bug.

As for the USA, yes, fabulous higher education. But is it the easiest country to be HIV+?  I think not.  I'd head to a county with pretty flexible immigration regulations about HIV combined with universal health care, if you are thinking of making your career.

haha, I think so, if they find out :(
really? I have not heard of other places other than US that provide high-standard care to HIV+ people and allow HIV+ people for immigration/work.  :-[ I would like to find out though, don't know where to turn to for help.
thx for the reply tho, at least I don't feel isolated  :P

Offline mecch

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Re: recently found out
« Reply #22 on: May 11, 2013, 11:47:28 PM »
haha, I think so, if they find out :(

My advice was to not wonder and worry and fear out of ignorance. You should contact an ASO and find facts about your status in Canada.

As for your future destinations, I guess you'll need to get facts on three different challenges.

Which country has the grad school and career opportunities you want.
Which country lets HIV+ people study, and which country lets HIV+ immigrate (may be different rules - one rule for students on visas, quite another for getting residency visas and citizenship.)
And finally, which countries have universal health insurance, and decent medical care

In fact, the last one may be the easiest to figure out.  Most European countries, for example, have universal health care and quite high standard of health professionals..  Most have all the latest treatments with few delays. 

I'm hardly an expert on this stuff.  Also I know many other countries around the world have universal health care and good health care, even developing countries...

Up to you to do your homework and make your dreams come true.

As for the USA - does NOT have universal health are.  It can be exceedingly difficult to manage health care costs in the USA. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Elkan

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Re: recently found out
« Reply #23 on: May 11, 2013, 11:59:21 PM »
My advice was to not wonder and worry and fear out of ignorance. You should contact an ASO and find facts about your status in Canada.

As for your future destinations, I guess you'll need to get facts on three different challenges.

Which country has the grad school and career opportunities you want.
Which country lets HIV+ people study, and which country lets HIV+ immigrate (may be different rules - one rule for students on visas, quite another for getting residency visas and citizenship.)
And finally, which countries have universal health insurance, and decent medical care

In fact, the last one may be the easiest to figure out.  Most European countries, for example, have universal health care and quite high standard of health professionals..  Most have all the latest treatments with few delays. 

I'm hardly an expert on this stuff.  Also I know many other countries around the world have universal health care and good health care, even developing countries...

Up to you to do your homework and make your dreams come true.

As for the USA - does NOT have universal health are.  It can be exceedingly difficult to manage health care costs in the USA.

Thank you so much for your help, I am actually trying to get contact to some lawyers for legal support. :) hopefully it's gonna help me.

Offline mecch

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Re: recently found out
« Reply #24 on: May 12, 2013, 12:11:01 AM »
That's right! Find out the facts.  Be proactive.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline James751

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Re: recently found out
« Reply #25 on: May 12, 2013, 09:07:17 AM »
hey elsan

my word of advice for you. live happy regardless of this virus. dont let this little virus beat your will power. and yes i am very hopeful that within a decade we will have cure for hiv. so why worry just chill and always check for the news about hiv treatment its always getting better. and yes even if you dont have insurance you can still have very cheap drugs from countries like india as us government allows you to import medication for personal use. the generic drugs industry is giant in india and it only cost people around $300. per year for the therapies. but that is also , only if you need dem.
 live happy ,

Offline James751

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Re: recently found out
« Reply #26 on: May 12, 2013, 09:12:17 AM »
HEY

i am in canada as well . it know quite a bit about it all. because i have known people who  got there PR after being tested poz for hiv. IT ALL DEPENDS ON WHICH  province you live in and what is the state of your health etc. i would suggest you a forum. just google ovalle vs canada and you will see everything there the guy who has built the website is amazing and let me know if i can provide you with more info.

Offline mecch

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Re: recently found out
« Reply #27 on: May 12, 2013, 09:29:26 AM »
hey elsan

my word of advice for you. live happy regardless of this virus. dont let this little virus beat your will power. and yes i am very hopeful that within a decade we will have cure for hiv. so why worry just chill and always check for the news about hiv treatment its always getting better. and yes even if you dont have insurance you can still have very cheap drugs from countries like india as us government allows you to import medication for personal use. the generic drugs industry is giant in india and it only cost people around $300. per year for the therapies. but that is also , only if you need dem.
 live happy ,

There is NO WAY an American import a year of HAART from India for 300 - a year!  The export price is much higher than the price within India. 

Also, Indian generics do not have all the latest drugs.  And drugs are not the only cost of healthcare for an HIV+ person.

Get your facts straight.
« Last Edit: May 12, 2013, 09:43:16 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Elkan

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Re: recently found out
« Reply #28 on: May 12, 2013, 03:31:40 PM »
HEY

i am in canada as well . it know quite a bit about it all. because i have known people who  got there PR after being tested poz for hiv. IT ALL DEPENDS ON WHICH  province you live in and what is the state of your health etc. i would suggest you a forum. just google ovalle vs canada and you will see everything there the guy who has built the website is amazing and let me know if i can provide you with more info.

thank you for your help. it seems it is still possible to immigrate to Canada with HIV+ status. :P

Offline James751

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Re: recently found out
« Reply #29 on: May 13, 2013, 09:27:43 AM »
ofcourse it is possible to immigrate to canada. but you will have to look for your options, like private health insurance plan , do you already have one. if not than try getting one. or once you get your work permit, you can look for an employer who will offer you group benefits plan, the options are so many. and the biggest thing is that you are inside canada.

Offline Ann

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Re: recently found out
« Reply #30 on: May 13, 2013, 09:57:28 AM »
HEY

i am in canada as well . it know quite a bit about it all. because i have known people who  got there PR after being tested poz for hiv. IT ALL DEPENDS ON WHICH  province you live in and what is the state of your health etc. i would suggest you a forum. just google ovalle vs canada and you will see everything there the guy who has built the website is amazing and let me know if i can provide you with more info.

James, are you hiv positive yourself? If you're not, you are not permitted to post in areas meant for hiv positive people only. You may only post in the Someone I Care About forum (if you have a close friend or loved one who is poz), the Am I Infected? forum (only to ASK questions in your own thread, not answer questions in other people's threads), or the Off Topic forum (where you may only post about things that have nothing to do with hiv).

Clarification would be appreciated.

Ann
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