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Author Topic: Awful way to find out..  (Read 6534 times)

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Offline RoseCityGuy

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  • Posts: 7
Awful way to find out..
« on: February 25, 2012, 01:28:05 AM »
  Hello everyone, I'm new to this forum an thought I'd share my story.
 I'm 23yrs old an was recently diagnosed 2-9-12.  I was recently with my partner now ex partner for almost 2 years. When we first got together we both got tested and both results were negative. With the understanding that we would be in a monogamous relationship, we had unprotected sex. Are relationship eventually hit a rough patch and we broke it off. A month later I found out he was in fact not monogamous and was quite promiscuous during our relationship. Two moths after we broke up, he told me he had tested HIV positive. I had a gut feeling that my fate would be the same, but was too scared to get tested right away.


 Well a few weeks went by and  I was having trouble breathing, shortness of breath, and a severe cough for several days. I decided to go to the doctors finally and radiographs revealed pneumonia. I told them I had potentially been exposed to HIV and got tested. Rapid test came back positive. I was then hospitalized for a week for my pneumonia and placed on oxygen. While in the hospital my CD4 count came back 64. I being only 23 and naive did not really understand what that meant. My viral load was 69,000. I knew the numbers weren't good, but my doctors were hesitant to inform me just how bad they were while I was so sick and in the hospital. However, I was started on a regiment before my resistance test came back , so I knew this was urgent. They started me on perzista, truvada, and norvir once daily. I was released a week later, feeling much better from my pneumonia. Spending my first week of being diagnosed with HIV extremely ill in a hospital bed was awful. I couldn't grieve in peace or private. It was almost a numbing effect.

It's been two weeks since my diagnoses and I'm coping as well as one would expect. It wasn't til my follow up apt with my HIV doctor that I had learned that my diagnosis is AIDS by standard definition. I also learned that the doctors were perplexed by my case because usually it takes longer than 1-2 years for the infection to affect the body so quickly to have a count as low as mine. However, I had two negative HIV tests just two years prior. Either both test were false negatives, or the strain I have is extremely progressive. But I am beyond that now, worrying about when or who infected me. I am relieved to be on a regiment with very little side effects so far.

My resistance test came back and I everything is normal. I go in two weeks for my recheck CD4 and viral load; I'm anxious to see what the numbers will reveal.  As far as telling anybody, I have had a difficult time. I have yet to tell anyone of my diagnosis. I'm just now coming to realization with the diagnosis myself, so I think in time when I have come to terms with reality, I hope I have the courage to share with my family and friends. My family, although loving and somewhat supportive of my lifestyle, are very naive to the culture and lifestyle. So I am nervous that they will initially be falsely alarmed of my "death sentence". I hope to see a counselor soon who can help me come up with ways to inform and educate my family about my manageable diagnosis. 


 As for my ex bf, I am not angry or feel any hatred towards him. It was my choice to have unprotected sex and it was my choice to trust that he was as committed to the relationship as I was. Also, if I had tested false negative there is no telling if he was the one who infected me of not. To me, it's a mute point that's irrelevant. I am just thankful to be on a regiment and being treated . I'm hopeful for a rise in my CD4 count and that I will feel somewhat normal again soon.


 It's a big relief to have a forum like this, especially since I have yet to have an outlet of any kind to share my thoughts and worries. Reading all the stories has been a big stress relief knowing things get better. Although I must say, of all the "recently tested positive" stories I've read, no one has had a lower CD4 count than I, which in turn scares me terribly. Seeing people diagnosed with CD4 counts in the 500/600, I could only wish I had caught this sooner before it got to a life threatening level.  That's my story for now, thanks all for listening and for all the support you have contributed by just sharing your own stories and advice.
« Last Edit: February 25, 2012, 10:06:15 AM by RoseCityGuy »
2/9/12     Diagnosed HIV+ - PCP pneumonia
2/12/12   CD4 - 64   VL- 69,000
2/15/12   Started Prezista, Truvada, Norvir
3/7/12     CMV Esophagus dx
3/19/12   CD4 - 69   VL- 450

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Awful way to find out..
« Reply #1 on: February 25, 2012, 06:21:12 AM »
Hi RoseCityGuy, welcome to the forums.

You can forget about false negative results. Your last negative result may have been false, but only in the sense that you were still in the testing window period after having been infected - ie you may have been infected in the previous four to six weeks before the test and hadn't yet created enough antibodies to trigger a positive result. "False" negative results only happen when testing is done too soon after infection has taken place.

The vast majority of people who have been infected will seroconvert and test positive by six weeks, with the average time to seroconversion being only 22 days. A six week negative must be confirmed at the three month point, but is highly unlikely to change, provided there are no further exposures during the window period. You could have been exposed many times before you finally got infected.

Some people do progress as quickly as you have. It's sometimes an aggressive strain, but more often it's just down to how well the body fights hiv on its own, without the help of meds. We have several members here who had to go on meds quite soon after initial infection, so you're not alone in that regard.

An example of how it's more down to the individual's body than the strain of the virus that dictates progression is my own experience.

I was diagnosed as a part of what they called a "cluster" of eight people who were all infected around the same time (within a year or so) by the same person, hence the same virus. Four of us needed meds right away (about four years after infection), two of us were able to wait another three years or so, and I'm still not on meds. I've been poz for coming up on fifteen years.

The most important thing here is that you know now and can therefore keep yourself healthy.

You seem to be coping pretty well, all things considered. You will get to the point where it's just another aspect of your life and you will learn how to cope with disclosure. You'll get there, just don't try to force it. Take your time.

Make sure you have a read through the Lessons and Treatments for HIV & AIDS pages of this website. Feel free to come back into the forums to ask any questions that may arise while you read. The only stupid question is one you don't ask, and it's only stupid because you didn't ask it. OK?

One thing I'd like to ask of you, if I may... could you please break up your text into smaller paragraphs when you write again? You can write it all out like you have, and then go back and hit Enter every few sentences or so to break it up and make it easier on the eyes.

It's really difficult to read such a long post when it is presented as a wall of text. Your concerns are important and I'd like to see as many people as possible be able to read and respond to them.

Hang in there, it gets better. Good luck with your next lab results and keep us posted.

Hugs,
Ann
xxx
« Last Edit: February 25, 2012, 06:22:57 AM by Ann »
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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 Cojo

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  • Posts: 196
Re: Awful way to find out..
« Reply #2 on: February 25, 2012, 11:55:08 AM »
Greetings Rose City Guy,

I want to commend you on how well you are handling things and how much good perspective you bring to your first post after the amount of trauma you have recently had.
I was diagnosed about 10 months ago and the one message that was given to me over and over (esp by our friend Ann) was "it gets better" with time, and I can tell you it does. It's not like waving a magic wand and all is well suddenly, but as you learn more, your body begins to heal, the meds beat the sh**t out of the virus and you land on your feet, it really does get better. I think we all go through and return to the classic stages of grieving - anger, bargaining, denial etc and then eventually acceptance. I wish I could tell you that I am at acceptance, but inch by inch it is coming. Let's face it, if we didn't expect it, this is one hell of a whack!
A few points of my own reflective wisdom...
- I really has the urge and need to tell others. I think it was a way to have a shameful, guilty me be affirmed by others that I am still OK. I only told a select few that I needed on my "team" and I am glad for that now. Disclosure only happens once and you can never take it back. Some would say that the "secret" fuels shame; to an extent I can see that, but for me it has helped me to keep this virus from being at the forefront of all my interactions.
- I am in my 40's and I really need(ed) to move beyond my images of AIDS circa 1990. This is when I came out and saw horrific sights of the heroes before us being literally destroyed by the virus. It is a tough mental shift to see it through 2012 eyes, but that is really important for perspective.
- When I start to panic with the what ifs (read a few of my early post, there are plenty), I have to remind myself of my doc who wrote in huge letters before me MANAGABLE. We have to accept that almost without exception, anything that this bug throws at is is manageable.
- lastly, I would share with you that the journey needs lots of patience (which I have none). I know we want to see test results, like NOW and rapidly improving numbers, but this is a journey, not a quick ride. The most I had ever had was a flu - a ten day journey...still getting my head around the fact that until the cure is here, it's a lifetime.
- my church, MCC Toronto has been a beacon of strength. MCC is a LGBT founded and flourishing church. I don't know if you have one in you town (where is Rose City???), but we webcast every Sunday morning at 11 am EST  www.mcctoronto.com.

Keep checking in with us - you have a ton of support here! Hugs.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline RoseCityGuy

  • Member
  • Posts: 7
Re: Awful way to find out..
« Reply #3 on: February 29, 2012, 01:28:58 AM »
 
 It has been three weeks since my diagnosis and I'm struggling to disclose my status to anyone. I have yet to tell a single person. I don't know where to even begin. I want to tell my mom because in the next couple weeks I have some pretty big decisions to make regarding my AIDs diagnosis. However, we do not have a real close relationship and I fear that she will be angry with me. I'm afraid of telling my best friends because I don't want them to look down on me or treat me any different. I don't want their sympathy or pity, I just want support. I don't know a single poz person I can consult with. 

 I'm coping with my diagnosis the best I could expect. I've been very lucky with having very few side effects. Right now the only thing that's terribly bothersome is the dry mouth I've been having at night. I'm waking up ever couple hours to take a drink. Is there anything I can do to relieve this?

  I have my first counseling session with someone from my HIV clinic on Thursday. I'm hoping she will be able to help me muster the confidence and courage to start disclosing to the people I love. I feel alone in a time I need peoples support the most. I am so grateful for this forum, without it, I would be very lost and confused. Thanks for your advice and support.
2/9/12     Diagnosed HIV+ - PCP pneumonia
2/12/12   CD4 - 64   VL- 69,000
2/15/12   Started Prezista, Truvada, Norvir
3/7/12     CMV Esophagus dx
3/19/12   CD4 - 69   VL- 450

Offline Matty the Damned

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  • Posts: 12,228
  • Ninja Please
Re: Awful way to find out..
« Reply #4 on: February 29, 2012, 01:44:22 AM »

 It has been three weeks since my diagnosis and I'm struggling to disclose my status to anyone. I have yet to tell a single person. I don't know where to even begin. I want to tell my mom because in the next couple weeks I have some pretty big decisions to make regarding my AIDs diagnosis. However, we do not have a real close relationship and I fear that she will be angry with me. I'm afraid of telling my best friends because I don't want them to look down on me or treat me any different. I don't want their sympathy or pity, I just want support. I don't know a single poz person I can consult with. 

 I'm coping with my diagnosis the best I could expect. I've been very lucky with having very few side effects. Right now the only thing that's terribly bothersome is the dry mouth I've been having at night. I'm waking up ever couple hours to take a drink. Is there anything I can do to relieve this?

  I have my first counseling session with someone from my HIV clinic on Thursday. I'm hoping she will be able to help me muster the confidence and courage to start disclosing to the people I love. I feel alone in a time I need peoples support the most. I am so grateful for this forum, without it, I would be very lost and confused. Thanks for your advice and support.

Hi Rose,

When one is first diagnosed there is a great, indeed overwhelming, sense that one must DO EVERYTHING RIGHT FUCKING NOW.

You should resist that urge.

There is no hurry. There is no pressing need to disclose to your family right now. In fact it's probably best you wait until you are better adjusted to your diagnosis. See your doctors. Get some blood tests done. Consider potential treatment options.

Once you have an idea where you might be going with your HIV, then you could consider telling your loved ones. Often they take the news best when you can show them the constructive path you intend to follow.

As for your dry maw, well that could be caused by anything. Most likely stress. Speak to your doctor about it.

Most of all, don't hurry things. You can spend your time with us your online family preparing for what you have to say to your real life family.

Also, welcome. :)

MtD

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: Awful way to find out..
« Reply #5 on: February 29, 2012, 02:02:29 AM »

 I don't know a single poz person I can consult with. 

 

Not true. You can consult with the members here whenever you want.  :)

It's normal to be sucked in a whirlpool of your worst possible fears when you're diagnosed, but in time this feeling will abate.

Matty has given you some great advice. Follow your doctors advice, don't rush with telling family or anyone until you feel you're ready. In the meanwhile we're here for you buddy.

Hugs.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Ann

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  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Awful way to find out..
« Reply #6 on: February 29, 2012, 08:39:09 AM »
Regarding your nightly dry mouth, you may find it helpful to stay well-hydrated during the day. Drink plenty of water every chance you get.
Condoms are a girl's best friend

Condom and Lube Info  



"...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 TexasPOZ

  • Member
  • Posts: 46
Re: Awful way to find out..
« Reply #7 on: March 12, 2012, 06:37:48 AM »
Hi Rose City Guy,
You're right. That was an awful way to find out. I also was infected by a partner who I thought I was in a monogamous relationship with while he was cheating on me big time. Sorry to hear that your CD4 was so low, but it will get better. You seem to have a pretty good attitude about the whole situation, and that is good. And take your time deciding who you're going to tell and when. I told my parents the day I found out, hoping for their support. They basically acted like it was no big deal-just take a few pills and you'll be fine. Which is basically true, but I was hoping for some emotional support. I got the emotional support I needed at a support group in town and at my church. Hang in there and keep your focus on the good things in life. Good luck and best wishes for you.

Offline emeraldize

  • Member
  • Posts: 3,348
Re: Awful way to find out..
« Reply #8 on: March 12, 2012, 08:14:57 AM »
Hey RC,

Re: dry mouth. Yep, stress can contribute to it. Try Biotene (over the counter) or an equivalent before going to sleep -- it's meant to help increase mouth moisture. I've used it when I had dry mouth due to a drug I used to take (not HIV-related) and it worked.

Em

Offline RoseCityGuy

  • Member
  • Posts: 7
Re: Awful way to find out..
« Reply #9 on: March 12, 2012, 03:52:24 PM »
 The good news is my dry mouth has gone away. I wish there was no bad news to report, but with numbers like mine, its pretty inevitable.

 I've been in the hospital again for the last 6 days. If you recall from my previous post  I was having "heartburn" issues, well they got worse. The pain was so awful, I didn't want to eat. I'm 6'3" , 129lbs which is down from 150lbs. My HIV doctor was very concerned about the weight loss and heartburn pain. Last Tuesday I had an endoscopy and biopsy where they found multiple ulcers in my esophagus. They had assumed it was likely a HSV 1 outbreak because at the same time I had an outbreak on my lips. Two days later, pain not improved at all, the biopsy results revealed I actually had a CMV infection in my throat. So now I'm on IV ganciclovir . Its been 4 days of this treatment and the pain is mildly better.

I'm trying to remain optimistic about my diagnosis and hopeful that the treatments working, but its hard when your in and out of the hospital. Its been 4 weeks since I've started my HIV meds, so hopefully I'll get recheck CD4 and viral load numbers done this week. I really hope to see an improvement.
« Last Edit: March 12, 2012, 03:55:48 PM by RoseCityGuy »
2/9/12     Diagnosed HIV+ - PCP pneumonia
2/12/12   CD4 - 64   VL- 69,000
2/15/12   Started Prezista, Truvada, Norvir
3/7/12     CMV Esophagus dx
3/19/12   CD4 - 69   VL- 450

Offline emeraldize

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  • Posts: 3,348
Re: Awful way to find out..
« Reply #10 on: March 12, 2012, 11:00:18 PM »
Hey RC,

Sorry to learn you're in the hospital and hope you're out of there soon.

Do you have some people coming in to see you? Certainly hope so.

What a rough patch you've hit. Do hang in and keep us up-to-date with your progress.

Hospital time can grind on. Hope the nurses are nice--that makes a difference.

Em

Offline RoseCityGuy

  • Member
  • Posts: 7
Re: Awful way to find out..
« Reply #11 on: March 20, 2012, 12:17:44 PM »
 It's been 5 weeks since I've started HAART and I got my new CD4 and viral load numbers yesterday.. My CD4 only went up 5, from 64 to 69. My viral load however went from 69,000 to 450.  I don't know how to feel about the new results. I'm extatic over the huge drop in viral load. I was expecting a big drop, but was thinking more around 16,000. So I am very happy with that. My CD4 on the other hand was disappointing. I know it takes longer for the CD4 to raise, but I was expecting more than just 5 points :-(.
2/9/12     Diagnosed HIV+ - PCP pneumonia
2/12/12   CD4 - 64   VL- 69,000
2/15/12   Started Prezista, Truvada, Norvir
3/7/12     CMV Esophagus dx
3/19/12   CD4 - 69   VL- 450

Offline drewm

  • Member
  • Posts: 1,111
Re: Awful way to find out..
« Reply #12 on: March 20, 2012, 12:28:40 PM »
Welcome to the forums. Wow. We share similar experiences. I was first dxd with a CD4 count of 8 and a VL of 500,000. Had pneumonia et al  and it was rough! Hang in there! Your numbers are not bad. Suppressing your VL is very important so going from 69k to 450 is excellent! I have been on HAART for almost 2 years and my CD4 count is around 330 and my VL is undetectable. You are in the right path!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline mikeyb39

  • Member
  • Posts: 930
Re: Awful way to find out..
« Reply #13 on: March 20, 2012, 10:38:14 PM »
hi rosecity,
sorry to hear about your hospitalization, I hope you are feeling better.  Your CD4's will rise although it will take a little time.  If you ever need to chat or have questions feel free to use the PM.  Take care!  HUGS

mike
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline Translation88

  • Member
  • Posts: 4
Re: Awful way to find out..
« Reply #14 on: March 25, 2012, 03:45:27 AM »
Hey there RSG, I can understand what you're going through. I started feeling ill in early November 2011 and it started with what I felt was heart burn. It turns out my GI saved my life with the HIV tests he ordered which came back confirmed positive with westernblot. My numbers were also pretty bad my CD4 was at 41 and my VL count was 229,000 however after a month and a half of being on meds (Truvada & Isentress) my CD4 is up to 121 and my VL is now undetectable. You'll get some good news soon and trust me you're going to feel on top of the world buddy it'll make all the other bad news seem trivial. I hope you continue on the road to recovery and stay healthy!
January 2012: GI orders HIV test.
January 2012: Tested positive.
February 2012: First visit with HIV specialist.
February 2012: Started on Truvada & Isentress.
February 2012: CD4 count 41 VL 229,000/ml
March 2012: Genotype shows no resistance.
March 2012: CD4 count 121 VL undetectable.

Offline Rhaegar

  • Member
  • Posts: 102
Re: Awful way to find out..
« Reply #15 on: March 26, 2012, 02:56:30 AM »
Welcome to the forums.  I'm sorry you had such a rough time in the hospital.  It seems like you're doing better now.

It seems like we're on the same medications as well.  I've been on them for 10 months now, and I can't say I've noticed any side effects.  The only thing that's been bothersome since starting meds has been heartburn that has recently gotten worse.

It seems like your medications are working great for you.  It took longer for my viral load to get to undetectable, nearly 8 months.

Best of luck to you.

-Kevin
« Last Edit: March 26, 2012, 02:58:28 AM by Rhaegar »
05/19/2011: Diagnosed.  CD4 159   VL 284,000.
04/29/2013:  CD4 789,   VL <20

Offline motobuchi

  • Member
  • Posts: 11
Re: Awful way to find out..
« Reply #16 on: April 05, 2012, 03:30:43 PM »
This is my first post on these boards. 

I wanted to reply to you because I too was just diagnosed in early February.  After some tests, I found out my CD4 count was 48 and my VL was 350,550.  I freaked out at first because I knew that basically meant I had AIDS.  It's a lot to hear on top of being recently diagnosed as HIV+.

What I'm still confused about is how I could have progressed that fast after testing negative as of June of just last year. For a while I thought something had to have been miscalculated.  Other times I thought a doctor would call me out of the blue to report my lab results were switched with someone else's.

In truth, none of that matters.  I'm also on Prezista, Truvada, and Norvir, as well as Bactrim (antibiotic to prevent PCP)  and Fluconazole (to prevent any fungal infections).  Im thankful to be on medication and glad to know I'm getting better.  Veterans of this disease will tell you 75% of the battle is in your own head.

Please stay strong and always remember millions of other people are fighting for and alongside of you.  Feel free to contact me for anything. 
« Last Edit: April 05, 2012, 03:34:08 PM by motobuchi »

Offline RoseCityGuy

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  • Posts: 7
Re: Awful way to find out..
« Reply #17 on: May 05, 2012, 02:08:38 PM »
GREAT NEWS!! Just 11 weeks after starting HAART , my viral load has dropped to undetectable ! My cd4 still lingering at 77, but I'm hopeful that its all up from here
:-).
2/9/12     Diagnosed HIV+ - PCP pneumonia
2/12/12   CD4 - 64   VL- 69,000
2/15/12   Started Prezista, Truvada, Norvir
3/7/12     CMV Esophagus dx
3/19/12   CD4 - 69   VL- 450

Offline emeraldize

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  • Posts: 3,348
Re: Awful way to find out..
« Reply #18 on: May 05, 2012, 05:37:53 PM »
Hey RC,

Nice to see a good update from you. I trust you're out of the hospital and continuing to improve.

Em

 


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