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Author Topic: It turns out hiv is the least of my worries  (Read 9314 times)

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Offline Bishop117

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It turns out hiv is the least of my worries
« on: December 01, 2013, 09:08:33 pm »
I was just recently hospitalized for PCP pneumonia and CMV retinitis turns out the both of these infections for opportunistic infections of me for having full blown AIDS this sucks was in the hospital for 9 days almost have my lungs collapse from the PCP pneumonia and I will more than likely lose my vision to see in the right now this on top of that also discovered that my cd4 as of 2 weeks ago is sitting at 43.  Scared I don't have a family to turn to because they left me.  Im pissed off that im not only dying from full blown aids in less than a year of infection. now i lose my vision.  as of my last tac clinic i also learned that i have hep B.  i have had nothing but nightmares about commiting suicide.  i have no one to taalk to that can help.  idk where i am anymore in life and its only jut begun and continues to beat me down. 
The brightest day always ends in the blackest night.

Offline jkinatl2

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Re: It turns out hiv is the least of my worries
« Reply #1 on: December 01, 2013, 09:24:17 pm »
I was just recently hospitalized for PCP pneumonia and CMV retinitis turns out the both of these infections for opportunistic infections of me for having full blown AIDS this sucks was in the hospital for 9 days almost have my lungs collapse from the PCP pneumonia and I will more than likely lose my vision to see in the right now this on top of that also discovered that my cd4 as of 2 weeks ago is sitting at 43.  Scared I don't have a family to turn to because they left me.  Im pissed off that im not only dying from full blown aids in less than a year of infection. now i lose my vision.  as of my last tac clinic i also learned that i have hep B.  i have had nothing but nightmares about commiting suicide.  i have no one to taalk to that can help.  idk where i am anymore in life and its only jut begun and continues to beat me down. 


Bishop, welcome to the forums.

I am sorry you are going through all of this at the same time. Sorrier still that your family has not been supportive. But please know this: Many of us Long Term Survivors have been through CMV and PCP and Hep B, and are doing well now thanks to treatment.

You are getting the care you need, and you WILL get through this. I myself went through two weeks in hospital for PCP about seven years ago. Did some permanent damage, but I am far more OK than I have a right to be at this point. At the time of my hospital stay I had 12 CD4 cells and my viral load was in the multiple millions. Now I am at 350 and my VL has been UD for years. You are NOT dying from AIDS. Please believe that. You WILL come back from this.

Might I ask what treatments you are on? When were you diagnosed? What does your doctor say insofar as strategy is concerned for prioritizing your care? Please know that

We on this forum are all here for you. And we will help out in any way we can.

"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 Bishop117

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Re: It turns out hiv is the least of my worries
« Reply #2 on: December 01, 2013, 09:38:04 pm »
as  of right now i am on
truvada
issentriss
fluconazole
dapsone
azithromycin
norco
valcyte
The brightest day always ends in the blackest night.

Offline Bishop117

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Re: It turns out hiv is the least of my worries
« Reply #3 on: December 01, 2013, 10:09:35 pm »
i was diagnosed on 10/5 of this year i found out about the pcp, cmv and aids on the 5th.  a few weeks later i was hospitlized again because i had a reaction to the sulfa drugs they put me on.  turned out they found hep b too.  this was on 11/2/2013.  my body is also a nonresponder to the HBV.  which just pours salt on the wound
The brightest day always ends in the blackest night.

Offline mecch

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Re: It turns out hiv is the least of my worries
« Reply #4 on: December 01, 2013, 11:26:28 pm »
I was just recently hospitalized for PCP pneumonia and CMV retinitis turns out the both of these infections for opportunistic infections of me for having full blown AIDS this sucks was in the hospital for 9 days almost have my lungs collapse from the PCP pneumonia and I will more than likely lose my vision to see in the right now this on top of that also discovered that my cd4 as of 2 weeks ago is sitting at 43.  Scared I don't have a family to turn to because they left me.  Im pissed off that im not only dying from full blown aids in less than a year of infection. now i lose my vision.  as of my last tac clinic i also learned that i have hep B.  i have had nothing but nightmares about commiting suicide.  i have no one to taalk to that can help.  idk where i am anymore in life and its only jut begun and continues to beat me down.

Oh my that is one heavy load...  You can talk here.  What about in life, if there's not family, are there other people you can talk to? Neighbors, friends, support groups, social worker/therapist, church? Anyone?

I think the title of your thread is a bit odd, you know.  Not that its important, dealing with all these opportunistic infections.  But HIV is the culprit behind all this, its the agent that destroyed your immune system.  So HIV is very much the concern!  Well the drugs will lick the active infection, now have to rally and fight back all these infections, etc. Truvada Isentress is brilliant!

So you found out in October or May?  I suppose October 5 if its the American dating system.  (And how do you know that its only been a year of infection?)  A lot to deal with. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Bishop117

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Re: It turns out hiv is the least of my worries
« Reply #5 on: December 02, 2013, 03:38:56 pm »
i found out about the aids pcp and cmv on oct. 5th on nov. 2nd i was back in the er for hep b and a reaction to the original sulfa drugs thyhad me on. 

as far as friends go i have 2 close friends that havent high tailed it away.  my family wants nothing to do with me and my dad took my truck away frome.  im having to walk everywhere now.  dont really have social connectivity here.  my ex bf of 6 years tries to crawl back but i refues totake help from him after all the hell he put me through.  im pissed off about all ofthis.  im scared shitless even more. 
The brightest day always ends in the blackest night.

Offline Peterdenmark

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Re: It turns out hiv is the least of my worries
« Reply #6 on: December 02, 2013, 03:49:16 pm »
Hi. Bishop,

I understand u are scared, and full of emotions right now - thats normal.yr situation is difficult right now.

U definitely have a low cd4, but many people have been there.
I was there my selve only 7-8 months ago, with cd4 at zero, and spend 5 weeks in intensive care.

I can see that they put u on trucada and isentress, and thats truly a potent cocktail, that will do wonders for yr health - soon u will be UD, and yr cd4 will rise. Mine are already at 260!

I worry about yr vision same u ofcourse, but have some faith in the docs, they have strong meds, and can make the difference for u.

And if yr family are that strange, then use this forum, it helps so many people every day - including me.

Best of luck to u.

Hugs
Peter

Offline mecch

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Re: It turns out hiv is the least of my worries
« Reply #7 on: December 02, 2013, 04:46:37 pm »
Wow.
First and foremost - hugs. 
Second - remember nobody deserves such rejection! Shame on your family. Keep this in mind.. When you are patched up, have your strength again, please tell them exactly what you think about their "love".  Jeez families can be shitty.
Cherish the two close friends. Tell them how much you love them and how important they are.  They can be a way to start meeting more people, too, eventually.
If you care to say, where are you? How far are you walking?  Are there any HIV agencies around you can contact, by the way?
P.S. - put a cross through the ex-boyfriend. If he was a jerk, you don't need him in your life ever again.
I was listening to Liz Taylor's speech in 2000 about HIV/AIDS. She said she never saw any bad things in life come from love.  She detested: mistrust, ignorance, judgement, hatred, silence, indifference.  Remember there are more people like her in this world and probably in your location, too.

http://www.youtube.com/watch?v=ElSCFzpYWrc

I know you are afraid but keep your love and it will return to you.
« Last Edit: December 02, 2013, 04:52:38 pm by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Bishop117

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Re: It turns out hiv is the least of my worries
« Reply #8 on: December 02, 2013, 04:53:05 pm »
i am trying to get through all of this.  i cherish what little i have left.  i jut find myself either pissed of at everything or scared to death. 
The brightest day always ends in the blackest night.

Offline mitch777

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Re: It turns out hiv is the least of my worries
« Reply #9 on: December 02, 2013, 05:12:44 pm »
Hi Bishop,

Welcome. I too am sorry for all that you are dealing with at one time. It IS a handful but I'm glad to hear you are being taken care of medically anyway.

Anger and fear seem like normal reactions given the circumstances. Just know that with time these emotions will fade. The anger toward your ex and your family might take a bit longer for you to move through.

As for the fear... that to will ease as you get past these bumps in the road. Many here can relate to what you are going through.

Hang in and keep in touch! :)

m.
33 years hiv+ with a curtsy.

Offline 2tcells

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  • Posts: 259
Re: It turns out hiv is the least of my worries
« Reply #10 on: December 04, 2013, 11:31:07 am »
I had pcp also and ended up in the hospital for a week in july when I found out I have aids and felt the same as u for awhile. I thought I was going to die then I thought life would never be the same. Now its better I know im not dieing and the only difference is being tied down to medicaid and meds. I had cd4 of 2 in july i have 54 in november. So u will get through it ;)
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud
8-5-14                     cd4- 95    vl-ud
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud
6-12-15                   cd4- 148  vl-?
8-15-15 start stribild
9-3-15                     cd4- 152 vl-ud
11-25-15                  cd4- 211 vl-20
2-17-16                   cd-4 194 vl-ud
4-1-16 start genvoya
5-10-16                   cd-4 220 vl-ud
9-19-16                   cd-4 182 vl-ud
12-2016                  cd-4  267!vl-ud
2018 cd4 187 switching meds

Offline Bishop117

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Re: It turns out hiv is the least of my worries
« Reply #11 on: December 05, 2013, 03:52:50 am »
I hope that things do get better its just hard to wrap my head around all of this at once.  Either way I go I lose my sight and if my body doesn't respond to the Hep B Vac's then I am stuck with that too.  That shit hurts physiclly and makes it harder to cope with.  October 6th is forever etched into my mind.  and I will never forget the people I lost in in all of this.  Even if they choose to forget me.  All I have left from this war is hope that I will get better and recover from this battle.  I know for sure I have more battles to face in the future.
The brightest day always ends in the blackest night.

Offline mecch

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Re: It turns out hiv is the least of my worries
« Reply #12 on: December 05, 2013, 05:57:28 am »
Did the doctors diagnose ACCUTE hep B or CHRONIC hep B.
Most people with ACCUTE hep B clear it completely.
If you have chronic HEP B, there is treatment and some of the treatment are anti-virals that also treat HIV. Therefore, since you will be on HAART for HIV, you will probably also be treating any chronic hep B.

I don't understand what you are talking about, for the vaccine. Its too late of the vaccine.  Either you clear it on your own, or you get treatment in tandem with the HIV treatment.  I don't think you should be worrying all that much about the hep B.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: It turns out hiv is the least of my worries
« Reply #13 on: December 05, 2013, 06:12:25 am »
I would like to know more about you, if you feel like talking of course.
Where are you now? Who's taking care of you?  Where do you live, what country?
Who is managing your health care - the doctors, the hospitalisations, paying for everything. You holding this all together yourself?
Also, again don't know if you want to talk about it, but who exactly rejected you in your family, and what did they say? Why did they do that?  NOBODY deserves such rejection.  We know it happens but it always makes me curious how people justify their hatred or fear....
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: It turns out hiv is the least of my worries
« Reply #14 on: December 05, 2013, 06:42:50 am »

If you have chronic HEP B, there is treatment and some of the treatment are anti-virals that also treat HIV. Therefore, since you will be on HAART for HIV, you will probably also be treating any chronic hep B.


Yes, he's already covered on this aspect. I just looked at his posting history for a reply I gave him in another thread:


If you end up with chronic hep B, one of the hiv meds can control that as well. It's emtricitabine, one of the meds in Truvada. I see from one of your earlier posts that you're already on Truvada, so hep B is already covered for you.



I don't think you should be worrying all that much about the hep B.


Agreed.

Hang in there Bishop. One day at a time!
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline scared2b

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Re: It turns out hiv is the least of my worries
« Reply #15 on: December 05, 2013, 06:55:22 pm »
Hi hun. You must be so overwhelmed and angry and so many other emotions right now... What you are going through is for sure very tough... but i'm glad that you found this site to vent and get support. but please talk to a social worker at the hospital you go to or find your local hiv serivces. you don't have to go through this alone.

There are doctors, nurses and other HIV/AIDS people that can hold ur hand and guide you through this...

please know that we care about you and we don't want you to harm yourself. so if you ever have any suicide thoughts just pick up the phone and call 911 and when they take you to the hospital, you can get some help from all the people there, from the social workers to find you all the help you need. there are plenty of support. And your doctors will treat you and get your VL down and your CD4 will come up.

Just hang in there but get help, you dont have to do this alone... XOXO

 


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