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Author Topic: Recent diagnosis and first time posting  (Read 3035 times)

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Offline Bsc86

  • Member
  • Posts: 25
Recent diagnosis and first time posting
« on: December 27, 2012, 03:29:32 PM »
So...here's my story. Name's Brandon. I've been lurking around for the last couple of months since my diagnosis and figured it was time to jump in. Plus I figured it'd be a good way to meet people :)

I was recently diagnosed at the end of September with a CD4 count of 8 when I went to the ER. I had been having issues with getting sick frequently, but never thought too much of it. Now, I'm not a small guy by any means...I'm 6'2", and weighed 195lbs in August of last year (2011). I started losing about 10lbs a month, and was excited for the weight loss...until I was down to 119lbs when my mom literally had to carry me in to the hospital because I couldn't walk without passing out. In June of this year I was having issues with getting so out of breath walking short distances, and passing out at random.

I spent the last week of September, and first 2 weeks of October in the ER. Diagnosed with PCP, CMV, Valley Fever, and AIDS wasting. It was a rough month for me. They told my mom that I would be gone in about 3 days, and they weren't sure they could do much for me.

I started doing Amphotericin treatments for 9 weeks, and my first regimen was Truvada, Norvir, and Prezista. Also taking Diflucan, and Valcyte. I had to go back to the hospital at the end of November for kidney failure (severe pain on my right side) from severe dehydration. ID doc decided to take me off Truvada and Valcyte because of the dehydration. She came to the conclusion that the mix of the two, and the Amphoterrible is probably what caused it. Spent another week in the hospital.

Anyway, long post, I know...but I have been back home for about a month now and feel great. At last check (2 weeks ago), CD4 was up to 114, but I don't remember the VL. And, I don't look like I just left a camp, weight-wise. I'm up to 160lbs :) I'm just hoping the feeling of feeling well again stays around this time. So far, I think it will.

I was terrified of my friends and family finding out at first. Everyone has been so supportive of me and so helpful. My mom has been nothing short of amazing and been by my side through the entire thing...I never would have expected it. It makes me sad to realize that some people aren't as lucky as I have been.

Ok...I'll end here. Look forward to talking to everyone and meeting new people :)
Thanks for reading!!
« Last Edit: December 27, 2012, 03:36:51 PM by Bsc86 »
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Re: Recent diagnosis and first time posting
« Reply #1 on: December 27, 2012, 04:50:04 PM »
Welcome Brandon -
Glad you found the Forums and that your health is improving.
Sounds like you have a great support network - particularly in regards to your mother.

I look forward to hearing more from you and hope that you find the additional information and support you are looking for here in the Forums.

Once again, WELCOME and may you continue to feel better.

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Fisher

  • Member
  • Posts: 272
Re: Recent diagnosis and first time posting
« Reply #2 on: December 27, 2012, 05:49:11 PM »
Welocme BSC.  We alll have our stories.  And the good part is, we are all here to support each other. Glad you're on the upswing.
- fisher
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

Offline Mrmojorisin

  • Member
  • Posts: 207
    • My Blog
Re: Recent diagnosis and first time posting
« Reply #3 on: December 27, 2012, 06:00:30 PM »
Welcome...Glad to have you here. There is plenty of support on these forums. I am happy to hear your health is getting better.
Started Meds On 5/1/2012 Norvair, Truvada, Prezista, and Bactrim

4/17/2012--CD4 83/ VL 353,000  7.0%
5/15/2012--CD4 218/ VL 4,970    14.1%
6/27/2012--CD4 146/ VL 420      6.1%
10/11/2012-CD4-223/ VL-62       9.5%
2/14/2013--CD4-215/ VL-119      13.6%
7/3/2013---CD4-256/ VL-UD       18.0%
10/18/2013 CD4-223/ VL-UD       22.2%
01/23/2014-CD4-381/VL-UD       25.3%--Dropped the Bactrim

"arrrrhhhhh ahhrrhhhhh aaaarrhhh"- Chewbacca

Offline texaninnyc87

  • Member
  • Posts: 245
Re: Recent diagnosis and first time posting
« Reply #4 on: December 27, 2012, 06:39:44 PM »
Welcome Brandon! Sorry to hear things got so crazy for you but i'm glad youre taking control of your health! Moms are the best huh?
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD
6/14 cd4 410 (35%) vl: UD

Offline Bsc86

  • Member
  • Posts: 25
Re: Recent diagnosis and first time posting
« Reply #5 on: December 27, 2012, 07:48:42 PM »
Hey thanks guys for the welcome and well-wishes :) It really means a lot to have a place to go to talk to other people who have or are going through similar situations. This site is actually where I found most all that I know about the virus while I was in the hospital. It's been a great resource.


And Texan, they sure are! I don't know where I'd be without her.
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline texaninnyc87

  • Member
  • Posts: 245
Re: Recent diagnosis and first time posting
« Reply #6 on: December 27, 2012, 07:53:26 PM »
i havent told my mom yet...she has enough to worry about! what aprt of the country you in brandon?
Dxd: 9/11/12
Blot confirmed: 11/12
12/12 cd4: 280 (20%) vl: 129,000
1/13 $tribild
2/13 cd4: 350 (26%) vl: 80
4/13 cd4: 510 (29%) vl:: 35
6/13cd4 350 (31%) vl: 21
9/13 cd4 492 (30%) vl: ud
12/13 cd4 846 (36%) vl: 100
1/14 cd4 480 (31%) vl: UD
3/14 cd4 650 (33%) vl: UD
6/14 cd4 410 (35%) vl: UD

Offline Bsc86

  • Member
  • Posts: 25
Re: Recent diagnosis and first time posting
« Reply #7 on: December 27, 2012, 08:00:08 PM »
I didn't get a choice in telling her, actually. She's a nurse, and the doctors told her while they had me under anesthesia for 2 days. Plus, she picked me up and put me in the car while I was asleep on the couch and took me to the ER...I was at the point where I was using her walker she had from a broken pelvis, and still couldn't support myself and passed out at random.


I'm in Phoenix.
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline WillyWump

  • Member
  • Posts: 7,100
  • 1DPxR156NnouErf4f51CsCMubMYw84j5Kv
Re: Recent diagnosis and first time posting
« Reply #8 on: December 27, 2012, 08:33:55 PM »
Geez Brandon, 6'2"" and 119 at one point? Holy cow!

Glad you are feeling better, and it seems like you are on the road to recovery  ;) Onward and upward, right?

I'm glad mom is so supportive, mine was too. It actually shocked me how well my mom took it. Yes, some of us are so lucky to have mothers like that :) Just love her back real good, I lost mine in June and miss her terribly.

Glad you found us, and hope to see you around here!

-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 Jmarksto

  • Member
  • Posts: 468
Re: Recent diagnosis and first time posting
« Reply #9 on: December 27, 2012, 09:18:02 PM »
Hey Brandon;  Welcome, and thanks for posting.  You have been through the ringer!  I am glad you are doing well and have such a good attitude.

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 emeraldize

  • Member
  • Posts: 3,335
Re: Recent diagnosis and first time posting
« Reply #10 on: December 28, 2012, 12:11:33 AM »
Welcome!

Online Jeff G

  • Administrator
  • Member
  • Posts: 10,825
  • How am I doing Beren ?
Re: Recent diagnosis and first time posting
« Reply #11 on: December 28, 2012, 12:43:56 AM »
Welcome , its great to hear your on the mend .

Offline tednlou2

  • Member
  • Posts: 4,763
Re: Recent diagnosis and first time posting
« Reply #12 on: December 28, 2012, 02:02:13 AM »
Welcome to the forums.  Man, you've been through hell.  So glad to hear things are much better.  I'm curious what your mom thought.  Did she think you had cancer, or did she have that mother's intuition and suspected HIV?

I look forward to hearing more from you.  We are a very supportive group.  Sure we have our differences at times, but we can come together again, after a heated debate.

Ted

Offline wolfter

  • Member
  • Posts: 4,389
Re: Recent diagnosis and first time posting
« Reply #13 on: December 28, 2012, 02:30:56 AM »
Welcome aboard.  Hope you don't mind but one of your points made me laugh.  Ampoterrible?   I did a couple of weeks in the hospital a few years ago and also had continuous infushions of that crap. 

Once you've been through the hell you've experienced, it's nice to read that you're feeling ok with the diagnosis and are ready to deal with it.  Maintaining a sense of humor is definitely one way to work through it all. 

Looking forward to getting to know you more.  We'll hopefully see you over in the off topic section arguing debating each other.   ;D  As Teddy mentioned, we sometimes piss each other off, but we're usually the first to respond if someone truly needs something.

Wolfie

productivity breeds content

Offline Bsc86

  • Member
  • Posts: 25
Re: Recent diagnosis and first time posting
« Reply #14 on: December 28, 2012, 02:36:37 AM »
Thanks again everyone for the support :) definitely will be posting more often, for sure!


Will - definitely onward and upward. Positive attitude is what I think has really kept me going. BTW, looking at your signature, it looks like we're on the same pills...recently switched to Epzicom after the kidney failure. I think that one is responsible for making me feel amazing the last few weeks. And yeah, 119lbs. I can wear skinny jeans, and they would fall off my waist. I looked awful.


Ted - Mom was disappointed. I don't know what her reaction was when they told her because I was under, but I do know there was a lot of crying. She never did it in front of me, though. She told me this was one of her greatest fears when I came out, was that I wouldn't be safe...once again proved her right...but not in a way I wanted. She knew I didn't have cancer, so she says. She said she had suspected HIV for a couple of weeks, after I started losing weight more rapidly and just overall becoming so seriously ill.
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline Bsc86

  • Member
  • Posts: 25
Re: Recent diagnosis and first time posting
« Reply #15 on: December 28, 2012, 02:41:03 AM »
Hope you don't mind but one of your points made me laugh.  Ampoterrible?   I did a couple of weeks in the hospital a few years ago and also had continuous infushions of that crap. 


hehe, yeah that's what all the doctors and my mom referred to it as. You know, it wasn't bad at first...had no reactions at all. But towards the end, I started getting the chills so bad my jaw would lock tight from clenching and I couldn't move. They had to have someone practically by my bed with 3 doses of Demerol. That was the only thing that would knock me out and control it.
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline wolfter

  • Member
  • Posts: 4,389
Re: Recent diagnosis and first time posting
« Reply #16 on: December 28, 2012, 02:53:01 AM »
Had you not suspected being infected with HIV prior to being admitted to the hospital?  I'm asking because you're younger and I wonder what messages you rec'd.  I'm still shocked that our youth aren't receiving the messages because of the ignorance of the moral right that influences school programs.

Your mom probably did know, parents have awareness about everything that affects their children. 

productivity breeds content

Offline Bsc86

  • Member
  • Posts: 25
Re: Recent diagnosis and first time posting
« Reply #17 on: December 28, 2012, 03:21:43 AM »
Yeah, I had suspected for a while before I was diagnosed. But, being ignorant, I was terrified to find out and afraid of the unknown, so I never took care of it. So, before being admitted, I had no clue. I would get colds and swollen glands that would last for weeks, and didn't think anything of it...just kept doing my thing thinking between working 60 hours a week and full time school, I was making myself sick.


As for school programs, you know, mine was worthless. Granted, my sex ed classes were really towards  the beginning of the whole AIDS/HIV issue (mid/early 90's), the classes didn't talk about anything other than wearing a condom...and I only had the class for a week, in 4th grade, and at that age, I didn't really even know what a condom was, let alone have any clue about sex. So, looking back and thinking forward, a lot more needs to be done to make sure kids (and even adults) are more aware of what this is and what it does.


As for mom, oh she knew. She knows everything about me...it's kind of scary. But we've always been really close and I share everything with her anyway...but this was something I didn't want to admit to even myself, let alone her. I wouldn't even take myself to the doctor/ER...I kept thinking I would get better. I will NEVER do that again. I'm sure my ID is sick of me...I've called her a ton of times asking questions and with symptoms that just turn out to be me being a hypochondriac. Better safe than sorry. I wouldn't wish what I went through on anyone...even my worst enemy.
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline positivelynerd

  • Member
  • Posts: 33
  • Life isn't a struggle, it's a wiggle.
Re: Recent diagnosis and first time posting
« Reply #18 on: December 28, 2012, 03:33:43 AM »
Welcome to the forums Brandon.

I'm new here myself.  Like you, I lurked around for a few months before diving in.  And from my limited interaction, it's a great place for support and information. 

It sounds like you've been through the wringer, but I'm glad to hear you're on the up (CD4 and spirits)!  And your mom's been so supportive!  Mine doesn't know yet, and I can't fathom her good ole Catholic reaction.  She still changes the subject when anything gay comes up.  If you don't mind my asking, when was your last negative test? 

Again, welcome, good luck, and good health in the new year. =)
5/25/12 Seroconversion
9/25/12 Diagnosed
10/12/12: VL- 799k, CD4 285
10/25/12 VL- 599k, CD4 274 
Started Sustiva + Epzicom
11/8/12: VL- 1790, CD4 412, 24%,
11/20/12: VL- 1470, CD4 350, 28%
12/19/12: VL- 584, CD4 293, 24%
1/16/13: VL- 411, CD4 404, 27%
2/13/13: VL- 314, CD4 523, 20%
3/13/13: VL- 171, CD4 404, 26%
4/10/13: VL- 96, CD4 397, 27%
5/8/13: VL- UD, CD4 422, 26%
6/5/13: VL- UD, CD4 462, 31%
7/24/13: VL- UD, CD4 559, 33%

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -A. Einstein

Offline Bsc86

  • Member
  • Posts: 25
Re: Recent diagnosis and first time posting
« Reply #19 on: January 01, 2013, 07:25:19 PM »
Nerd - I didn't really get a choice in telling her lol...they had me sedated and under anesthesia for the first 3 days I was in the hospital. When I finally woke up, SHE told me what I had, not a doctor. My mom was raised in a hardcore Catholic family too. I was actually more terrified of coming out than this...and she hasn't had a problem with either. It might be a huge weight off your shoulders, and you never know, she may be more supportive than you think...but do it when you're ready. Don't let anyone push you in to it.

In some other good news, I got my bill from the 2.5 week hospital stay in September/October....my insurance plan was a 70/30, with a $7500 deductible... the bill was $356,000 and some change. United Health and Banner covered the entire thing. I cried when I read the letter. I thought for sure I'd be paying them for the rest of my life. So...one good thing that United did for me. Looks like 2013 may be a good year, after all!
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

 


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