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Author Topic: to hell and back: one year since the diagnosis, and doing well  (Read 1872 times)

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Offline NY2011

  • Member
  • Posts: 141
to hell and back: one year since the diagnosis, and doing well
« on: November 05, 2012, 12:34:10 AM »
I guess I'm writing this mostly for people who are newly diagnosed, and for those who are trying to make sense of the news, and how it's impacting their life in the near-term. It's for those who don't understand how they could have failed themselves by taking their excellent health for granted, by screwing it all up by being so foolishly human.  For those who can't believe that the price for one bad decision is paid with your life and your health. For those of us who feel that it's such a heavy price to pay and it's just not fucking fair. 
   
I think about what I was going through a year ago, how the acute infection was really hitting me hard, and how I got pretty sick just two weeks after penetrating a guy I had met, unprotected, who didnt know he was infected. I had an initial fever of 104 F, and a rash on my body.  I was having awful night sweats, crazy dreams, and had no energy.  It was like the worst flu I ever had in my life.  I was talking to my friend about it, and the symptoms sounded suspicious to him, so he suggested that I visit his doctor and request a PCR exam.  It was the first time I've ever heard of that test.  So he arranged an emergency appointment, and I met with the doctor.  I was given a rapid HIV saliva test in the office, which was negative, but was told that the blood work is more indicative and would take a few days.  I spent those next few days begging God for this to be a bad case of syphillis.

Halloween Day 2011 - My appointment was at 1pm to meet with the doctor for the results of my blood work.  The office was empty.  As a gay guy living in NYC, I was no stranger to getting HIV test results, but something felt very tense about this visit. I felt the tension of being seconds away from the worst news of my life. The doctor asked me to come into the office. Closed the door. Looked right into my eyes and gave it to me straight; I'm HIV positive and that I'm going to be okay. Okay? WTF? I looked away, and heard "GAME OVER" in my head.  I started on meds that evening.  I was so embarrassed to go to the pharmacy and fill that prescription, but I found the courage to do it. 

Well, the weeks went on and I started to regain strength.  I wasn't 100% myself, but I had to get back to work, and begin picking up the pieces of my life.  Truth is, though my health began to improve, I had become extremely paranoid about germs and my well-being, and took extra precautions, obsessively, which meant leaving work early each day, taking full lunch hours, eating extremely healthy, taking lots of vitamins and washing my hands constantly.  The original med regimen was destroying my stomach, and several office employees commented about the bathroom after I used it.  I'm sure rumors began to swirl about me and this strange, distant, sick version of me. I was going for blood labs once per week. My liver enzymes were through the roof, and my cholesterol was climbing dangerously high.  In addition to my newly acquired health issues, I found out that I lost an important promotion at work that I had earned a few months earlier.  I was demoted, and the disease was now affecting my financial and professional life, as well as my health. 

Eventually, my doctor changed the drug regimen to Atripla, and within a week, my lab results and stomach issues began to improve substantially. I stopped feeling tired, and I felt stronger each day. I slept less and accomplished more. I was able to re-engage in social activities, and began showing my face again.  Spring was coming, and I signed up for several athletic things, and my ability to focus at work had returned.  Once I felt stronger, I realized that a formula for success for me is to eat healthy, take lots of vitamins, and be active.  To take calculated risks.  No more running outside barefoot without a jacket in the cold.  No more sketchy sushi places.  Less alcohol consumption in social situations.  A daily vitamin regimen. Exercise without pushing myself to unrealistic limits.  Smarter travel decisions.  Earlier bed times.  Scheduled doctor's visits.  A manageable work load that doesn't stress me or my immune system.

I'm confident that I'm going to live a life that will likely parallel the one I had prior to the diagnosis.  I've been dating a great person whom I definitely would never have met under different circumstances, and I'm completly re-engaged in traveling, in sports, in social events, and in life.  I take my meds every day with 100% compliance.  Never missed a day, even with a few trips across the country and a couple of trips halfway around the world. 

My life is better than I would have expected it was going to be a year ago. I gave myself the time to grieve, to lament, and to sort it all out for myself, on my time.  I read about it. Alot. I learned about it. I learned about what is available now, and what is on the horizon. 

Be prepared to impress yourself with what you can overcome and work though.

Be well.
« Last Edit: November 05, 2012, 05:16:09 PM by NY2011 »
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline Common_ground

  • Member
  • Posts: 288
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #1 on: November 05, 2012, 01:29:42 AM »
Hi NY and thanks for sharing your story, truly inspirational.

I can just second that I never thought being HIV positive I could feel as well as I do today and even thou I was never very sick the news made me a mental wreck and NOWHERE could I imagine or think during the first few weeks following the diagnosis that I could write such a thing that life post diagnosis is pretty good.

Just as you did, I read A LOT, everything I could lay my hands on and it helped me to get a better understanding of basically everything HIV related and made me more comfortable with myself.

Good health and best wishes to everyone!

/C

   
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline weasel

  • Member
  • Posts: 1,666
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #2 on: November 05, 2012, 11:11:58 AM »


  Hi   NY2011    :)

        I am glad to here you are handling your HIV   so well .

        Life goes on ,   With my new meds I feel like the old me    ;)

        Personally I have so many things I want to do  , I just try to keep

        my HIV  on the back burner  .

                                                Be well ,   Weasel 

           
" Live and let Live "

Offline Cojo

  • Member
  • Posts: 193
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #3 on: November 05, 2012, 11:13:28 AM »
Thanks for this excellent post. I was just reflecting on the same reality of how the first few months after dx was an anxiety roller coaster and I am going to add a new post as well. Very inspiring - kudos
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

Offline NY2011

  • Member
  • Posts: 141
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #4 on: November 05, 2012, 03:52:11 PM »
Glad to hear. I like reading about other people's experiences. 
« Last Edit: November 05, 2012, 05:05:49 PM by NY2011 »
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline lincoln6echo

  • Member
  • Posts: 109
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #5 on: November 05, 2012, 04:31:22 PM »
Hey, thx for the post. Oct 31 was two mo's since I got the news, infected this past June.

Have had some pretty good days as of late,,today, not so much. Having a rough go of it these past few days but glad to read things like this to get some perspective.

ups and downs like others along the way.

Offline NY2011

  • Member
  • Posts: 141
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #6 on: November 05, 2012, 05:40:54 PM »
@lincoln6echo: I just read some of your posts, and noticed that you mentioned thinning hair.   I forgot about the noticeably thinning hair that I was experiencing within the first few weeks, especially before starting meds.  It grew back though, and nothing looks different.  No facial changes.  Nothing.  It helped alleviate the anxiety that I was having.   

Very happy about that.

 
« Last Edit: November 07, 2012, 10:44:45 AM by NY2011 »
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline Anqueetas

  • Member
  • Posts: 116
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #7 on: November 06, 2012, 05:36:11 AM »
Its feel pretty to read your story. I gut the feeling the your first combination must be with some PI probably Lopinavir/ritonavir. I have the same experience with it, you have to poooo all day. Glad you get the right med for you. The period of trial and error on one own med can be very distressing mentally and physically.
ARS, hospitalized for very high fever-July 2011
diagnosed HIV positive - October 16 2011
CD4 460 19.5% VL 49000 - late October 2011
CD4 625 19.5% VL 50030 - January 2012
CD4 369 19% VL 69000 - March 2012
Start Sustiva+ Truvada - April 17 2012
CD4 524 24.5% VL UD - August 22 2012
Switch to Nevirapine+Truvada
CD4 490 26% VL UD - November 2012
CD4 539 29% VL UD - February 2013
CD4 621 28% VL UD - May 2013

Offline Jmarksto

  • Member
  • Posts: 474
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #8 on: November 06, 2012, 07:46:03 PM »
NY2011;  Thank you for your post, it is inspirational.  I am 6 months in now myself and parts of your story seem so parallel - like the embarrassment filling the first prescription.

Good to hear you are doing well,

JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline jayson702

  • Member
  • Posts: 24
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #9 on: November 09, 2012, 01:25:19 PM »
Wow great story I'm so glad your doing well.

You cd4 numbers are incredible. I wish to have those numbers someday myself.

Offline Fisher

  • Member
  • Posts: 273
Re: to hell and back: one year since the diagnosis, and doing well
« Reply #10 on: November 09, 2012, 08:54:09 PM »
Thank you buddy! Hope I follow in your foot steps!

-fisher
- fisher
07/14 CD 391 %20 VL UD
04/14 CD 486 %23 VL <20
11/13 CD 351 %21  VL <20
10/13 CD 390 %16  VL <20
06/13 CD 315 %19  VL  22
02/13 CD 396 %14  VL <20
12/12 CD 392 %13  VL 320
11/12 CD 428 %13  VL 1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 Western Blot
05/83 04/98 - Monogamous Partner Being Negative
ARS - Los Angeles Dec '82

 


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