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Author Topic: Just found out, dont know what to think  (Read 5468 times)

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Offline midland moe

  • Member
  • Posts: 39
Just found out, dont know what to think
« on: May 02, 2008, 06:00:14 AM »
Ive read through this section while waiting to be approved for posting, and Ive already found some comfort in seeing that my situation isn't as DIRE as I initially assumed...I found out in the hospital after I went in for what I thought was pneumonia...in the emergency room I remember a Dr asking me if they could "screen" me for HIV, I agreed but thought "hmm they must ask everyone if they can do that nowadays" and went on thinking it would be 24-72 hours til I was back on the streets...either the next day or 2 days later a Dr. came into my room and said well the HIV test we ran came back positive but we always run a secondary test to rule out false positives and we should get that result tomorrow...I sat there stunned and just said "No". The next day while I was getting an ultrasound on my heart a different Dr. walked in and in front of the nurses and students standing around told me.."well the second test results came back and your HIV+" I didnt know what to say or do...he asked me if I heard him and understood, I nodded and closed my eyes...

I was diagnosed with PCP pneumonia and full blown AIDS...t-4 count of 85 and viral load of 580,000...
come to think of it, I had been getting sinus infections and flulike symptoms one right after another since November of last year...

I told my mother first....I asked her if there was anything I could say that would make her hate me...she said "I dont know"....and I told her...she didnt really have a reaction at first, but said well now we know what it is...so we can now get the right treatment...she told my sisters, my brother Im sure, some of her friends, her husband (my stepdad)....I asked her to stop telling people and she agreed. I told my wife right after I told my mother, she walked out of the hospital room, I expected at least that. She was tested the next day and was negative (thank god) and thus our 6 year old daughter is not at risk (if anything good comes from this it is the fact neither one of them got infected, I dont know what I would do if that had happened.)

the next day my wife came into the hospital and woke me up standing next to the bed, she had a picture of our daughter and a picture of us before our wedding, and told me I needed to get better because my daughter needed me home and she needed me home...I dont expect it to be easy, and I expect to get the full range of emotions from her, but that was extremely uplifting in my lowest moments.

I didnt mean to be morbid when I said I was relieved after reading some of your stories about my current levels, I just didnt know how to gauge my realistic expectancy of even living with "full blown AIDS" and a "t cell count of 85" and "viral load of 580,000". I assumed that meant "near death, not long to go as AIDS has progressed into the final stages".

I must have had this for at least 5 years, because any risky behavior stopped 5 years ago. How my wife didnt have it is a miracle, but thank god for miracles.

I just got classified in the state care program and will see a Dr. next week sometime to get started on my AIDS/HIV meds...

Im glad I found this forum, I think Im gonna need some support and or advice...

I feel better just posting here, and reading some of your stories...

The first 2 nights after I found out every time I closed my eyes terrible horrific nightmares (awake or asleep)
started, and I couldnt make them stop...all my fears...falling, trapped in sand or underwater, buried alive, etc etc a non stop rolling nightmare that I couldnt stop...Id open my eyes and think happy thoughts and theyd instantly morph into doom gloom and I guess Id say satanic evil visions? Im not a religious person by any means, but just pure evil would be the only terms I could use to describe the dreams...I called a chaplain in to just read to me so I could not be alone and have the dreams...thank god that went away....I dont know if that was the fever, or my brains way of assimilating the news or what, I truly thought I was going to die during the dreams, I thought they were there to get me and take me to hell....

I think I need some mental help as well...

I also have a drug problem, I havent used since I went into the hospital a month ago, but Ive been out only a week and a half...in the hospital I dreamed about using...luckily not since Ive been home. But Ive had things keeping me busy. Its the downtime Im afraid of...when I get bored...I need a support group...I went to AA and NA years ago but never really participated or got a sponsor or anything...and never really stayed sober for long...Ive used almost daily alcohol or other things since I was 15, and Im 40 now.

Ive rambled long enough, thanks for actually reading this far (if anyone has!) and I appreciate any advice, comments, or response to this post. thanks for having me.
Diagnosed + 4/15/08               VL 570,000  cd4  85
started ATRIPLA 7/20/08         VL 301,757  cd4  45
8/22/08                                 VL       171  cd4  185
11/25/08    undetectable                           cd4  371

03/30/09    undetectable                           cd4  464
07/07/09    undetectable                           cd4  419
12/04/09    undetectable                           cd4  534
        cd4 % 20
04/09/10 undetectable                                cd4  667
         cd4%  22.1
07/16/10   undetectable                              cd4  573
         cd4%  23.8
03/25/11   undetectable                              cd4  655
         cd4%  29.4

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,971
Re: Just found out, dont know what to think
« Reply #1 on: May 02, 2008, 06:30:48 AM »
Midland,

First, welcome to the forums.  You've found a great place of information and support.  You can always ask us anything.

I was diagnosed in 1989, while in treatment for drugs/booze.  So, I can relate to the addiction thing.  I worked full-time for a few years, then started getting extremely ill and had to stop working.  In 1994, I had a severe bout of wasting (80 lbs) and a CD4 count of 4.  Hospice was called in, my family that were living in other parts of the US came home etc.  Happily I made it through that.  I was on all the "nasty" meds of those days (megadosing of AZT, ddI, ddC, etc.).  I went on disability in '94 also. 

Unfortunately, I got caught up in addiction again, this last time it was prescription medications (amphetamines, tranquilizers, narcotics, sedatives).  I've been clean now for 2 & 1/2 years.  About a year and half ago I went back to school to finish a BS in psychology.   I've told most of my story throughout other parts of these forums, but I just wanted you to get to know me a bit. 

The nightmares you experienced were probably a mixture of being diagnosed and maybe also withdrawals from whatever it was you were using (drugs/booze) before you went into the hospital.  There are some people (few that I know of) who can beat addiction without attending 12-step meetings.  But, for me, they're life-saving.  Especially in the early days of stopping using.  You'll find great support and people who understand your addiction, behavior etc.

I'm glad you're set up with a doctor already.  The meds today are so much better than they were in the "old days."  There are all kinds of links in the upper left hand corner under the Aidsmeds logo i.e. lessons, drugs etc.  You might want to give these a read.  I encourage you also to get in touch with your local ASO (Aids Service Organization) to help walk you through everything you might need as far as government assistance, a support group, and the name of a good therapist, if need be. 

Again, welcome to these forums.  Good luck to you, and please keep in touch and let us know how you're doing.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline midland moe

  • Member
  • Posts: 39
Re: Just found out, dont know what to think
« Reply #2 on: May 02, 2008, 06:39:57 AM »
thanks for your reply...hadnt thought of the detox causing the nightmares...actually I was so sick the week before I went to the hospital I wasnt able to use much of anything..I just went to work and slept. It takes 5 days to detox from meth but usually it just makes you sleep for 4 days and in a stupor the fifth...who knows, Im just glad it stopped.

When I was in the hospital I had a 104.5 F temperature and the nurse came in and said there was a chaplain there to see me, it didnt occur to me she asked him to come because I had just found out I was hiv+, I thought she called him because they thought I was about to die...I also thought I was petting my neighbors cat off and on for a week in ICU...I was rubbing the blanket on the bed...

I guess it hasnt sunk in yet...because I dont really feel any different, I just know I could get sick very easily and it would be hard to recover...but I dont feel weak or sick...
Diagnosed + 4/15/08               VL 570,000  cd4  85
started ATRIPLA 7/20/08         VL 301,757  cd4  45
8/22/08                                 VL       171  cd4  185
11/25/08    undetectable                           cd4  371

03/30/09    undetectable                           cd4  464
07/07/09    undetectable                           cd4  419
12/04/09    undetectable                           cd4  534
        cd4 % 20
04/09/10 undetectable                                cd4  667
         cd4%  22.1
07/16/10   undetectable                              cd4  573
         cd4%  23.8
03/25/11   undetectable                              cd4  655
         cd4%  29.4

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,971
Re: Just found out, dont know what to think
« Reply #3 on: May 02, 2008, 06:49:43 AM »
The physical detox may be 5 days, but mentally it could take much longer.  Of course, the high fever/just being diagnosed could contribute as well.  I wasn't suggesting it was caused 100% from the drugs. 

Yes, it takes awhile for you to wrap your head around a new diagnosis.  Just take a few breaths and hang in there. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline VM-Bass

  • Member
  • Posts: 38
Re: Just found out, dont know what to think
« Reply #4 on: May 02, 2008, 04:58:28 PM »
Welcome Midland!!  I'm fairly new here myself, but this place is a supreme comfort to me whenever I come and read about people going through the same thing.  It is good to know you're not alone.   :)

I have a cousin who was diagnosed under circumstances just like yours.  He was feeling really bad, and couldn't shake whatever it was he had.  He went into the hospital, found out he had PCP and was given an AIDS diagnosis on the spot.  He had a CD4 count in the single digits and viral load over a million.  That was 16 years ago, and he's now doing as well as anyone else.  His viral load remains undetectable, and his CD4 count is great.  He, like Betty, was one of the fortunate ones to survive the awful drugs he had to be on back then.  He is an inspiration to me...

Again, welcome, and if there's anything you need to know, just ask.  You'll find the people around here can answer just about any question you might come up with. 

Sending love and prayers your way... :)


P.S.  Midland Moe.  That wouldn't be Midland, Texas would it?  A nosy Texan just wondering... ;D ;D

1/11/08                  4/14/08         6/12/08

CD4: 927                    838               883
CD4%: 42                    40                 47
Viral Load: 2170           926               173

The friends thou hast, and their adoption tried, grapple them to thy soul with hoops of steel...
---Shakespeare

Offline midland moe

  • Member
  • Posts: 39
Re: Just found out, dont know what to think
« Reply #5 on: May 02, 2008, 11:29:05 PM »
 ;D yeah im  from texas but not midland...i picked a name after reading the thing about anonymity etc..
Diagnosed + 4/15/08               VL 570,000  cd4  85
started ATRIPLA 7/20/08         VL 301,757  cd4  45
8/22/08                                 VL       171  cd4  185
11/25/08    undetectable                           cd4  371

03/30/09    undetectable                           cd4  464
07/07/09    undetectable                           cd4  419
12/04/09    undetectable                           cd4  534
        cd4 % 20
04/09/10 undetectable                                cd4  667
         cd4%  22.1
07/16/10   undetectable                              cd4  573
         cd4%  23.8
03/25/11   undetectable                              cd4  655
         cd4%  29.4

Offline VM-Bass

  • Member
  • Posts: 38
Re: Just found out, dont know what to think
« Reply #6 on: May 03, 2008, 01:01:54 AM »
;D yeah im  from texas but not midland...i picked a name after reading the thing about anonymity etc..

Well, Midland is an OK place to be from:  I just wouldn't want to live there.   ;D ;D

1/11/08                  4/14/08         6/12/08

CD4: 927                    838               883
CD4%: 42                    40                 47
Viral Load: 2170           926               173

The friends thou hast, and their adoption tried, grapple them to thy soul with hoops of steel...
---Shakespeare

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Just found out, dont know what to think
« Reply #7 on: May 03, 2008, 09:28:13 AM »
Hi Midland

Welcome to the forums.  (Sorry you joined the club though  :) )  I had similar experiences; they are posted in my first thread.  Btw, you can see people's bios and a history of what they have posted if you click on their name.

It's difficult not to reflect on what happened in the hospital -- those hallucinations can be very intense and it's hard to separate out what was really happening from what you "saw" and "heard".  If you were in for over a week in an ICU you were probably on multiple simultaneous antibiotics at pretty high doses -- some of them (Levaquin(?) for instance) have known hallucinatory side effects while one is on them (but they don't linger after you come off). 

In the hospital one becomes intimate with Death, its approach and seduction.  But as your wife pointed out to you; you have a lot to live for.  Being so close to Death, having lingered in and then rejected its partial embrace, can be a deeply spiritual experience for many of us.  It certainly points up choices in high relief.  I've been out of the ICU almost two years, got off oxygen support, went back to my job and then off it for something new, reached undetectable VL and the CD4s are up halfway back to normal.  But I still think daily about about what I learned from that time in the hospital and hope and try to use it to make daily choices about how I live.  While I wouldn't wish the experience on anyone and have zero desire to repeat it, it was in some ways oddly empowering, helping me make some changes that I had been thinking about for decades. In some ways one can be simultaneously more peaceful and more energetic.

That's not to say many things aren't a struggle, and if anything, I'm more aware of all the stupid ways I mess up daily.  But my perspective on my screw-ups is a lot different now. 

I hope you can find the same peace.  Reading books to and taking rambles with a 6 year old might be a possible way to start.  And hugs -- those are pretty healing too.

Best wishes to you
Assurbanipal

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Esquare

  • Member
  • Posts: 237
Re: Just found out, dont know what to think
« Reply #8 on: May 13, 2008, 01:23:50 AM »
Midland,

I am glad you found the forums.  You will find much support here.  I had the full blown diagnosis so you aren't alone in that regard.  My numbers rebounded beautifully and so can yours.  You still have a long life ahead of you. 

Offline WillyWump

  • Member
  • Posts: 7,195
Re: Just found out, dont know what to think
« Reply #9 on: May 17, 2008, 08:46:45 PM »
Midland,

Hello fellow newbie! I dont' really have much to add but I wanted to tell you that the people here are a Godsend...you are in the right place. Keep your chin up and God bLess :)
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 ubotts

  • Member
  • Posts: 347
Re: Just found out, dont know what to think
« Reply #10 on: May 19, 2008, 08:02:10 AM »
Hi and welcome,

I was diagnosed with full blown aids. my tcells were down to 27 and VL was skyhigh..

Its scary but you learn to deal with it in time...

Now its about getting you just the right cocktail, and hopefully you will be on the right road and get your tcells above 250-300 and Vl undectable...

Good luck and glad to came to the right place.

We are all here for one another.. ;)

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 Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: Just found out, dont know what to think
« Reply #11 on: May 19, 2008, 06:58:00 PM »
Midland welcome to the forums.   Stay close and continue to talk through all of this.   Each item, each thing you have spoken about has been felt by a great many of us.   I would not trade places with you as I remember that October day and it took alot of wisdom and handholding by so many here that pulled me out of that pit.   Painful as it is, you will survive (yes even with you numbers).   For me this was an emotional rollercoaster full of doubt, remorse, guilt, anger and then, a bit of joy from time to time.    I have found that the luggage we carried prior to being told we were hiv is still present, however, if you start getting rid of some of these things, you will find your life is alot more easy to deal with being pos.   You do not have to do this in a set amount of time, but the faster you heal emotionally, the better you will be.    Let your doctors take care of your hiv.  Listen to them and gain advise here.  As for addiction.  I struggled with that for a long time and have put alot of years together without it.   I find it is my addictions that will kill me faster than hiv ever would in this day and time.    It seems so overwhelming right now, but if you look at things a bit less future bound, you can deal with this easier one step and one day at a time....   

Hugs,

Eric

 


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