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Author Topic: My top "What if's" that are driving me crazy!  (Read 2689 times)

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Offline Cojo

  • Member
  • Posts: 189
My top "What if's" that are driving me crazy!
« on: June 08, 2011, 07:47:16 PM »
Hey folks,

Your responses in my other thread have been so heartfelt and kind, I am beyond words of thanks. It has been just over a week since my + diagnosis and I have a Dr. appointment in a week. In the meantime, I have had tons of "what if..." worries dancing through my mind...dancing is a light term!!

The top four what if worries are....

1. What if my first blood work shows a very high viral load and a really low immune system?
2. What if I have a drug resitant strain?
3. What if I start meds and the side effects are unbearable?
4. What if I have other infections / conditions? (hep, diabetis etc)

I am both frightened but also wanting to get the first data in so I know where I stand...
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 Nicolas2

  • Member
  • Posts: 51
Re: My top "What if's" that are driving me crazy!
« Reply #1 on: June 08, 2011, 08:13:31 PM »
That's the thing with this Cojo - we need to be patient. There is no other option, no fast track.

Our more experienced friends will explain it to you more, but for I understood (and I'm also new in this): the important thing is to see the TREND. Not the very current state of viral load, CDs, other blood and general parameters...and it takes time for all that.

And again: those feelings and thoughts and fears are so normal.

But I'm sure after only the very first doctor appointment - you'll feel much better.

--Nik

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: My top "What if's" that are driving me crazy!
« Reply #2 on: June 08, 2011, 08:58:05 PM »
Welcome to the forums, BTW

The uncertainty can be frightening, but the reality is there are lot of options and lot of ways to address med issues.  It is really good that you caught this before you had a serious opportunistic illness -- the sooner you catch these things the better. 

But you've heard all that before so, here's specific answers to your questions:

The top four what if worries are....

1. What if my first blood work shows a very high viral load and a really low immune system?

You will start on drugs and be glad you started them before you had an OI

2. What if I have a drug resitant strain?

You will choose from a somewhat more limited set of drugs, but still with many options.  Few people (well under 1 in 5) have a resistant strain at diagnosis.  And if they do there are usually 20 active drugs from which to construct a 3 drug regimen instead of 30 drugs.

3. What if I start meds and the side effects are unbearable?

You change to a different set of drugs.  There are lots that work.  (And you get AIDSMEDS bragging rights for at least a week   ;D)

4. What if I have other infections / conditions? (hep, diabetis etc)
You will talk to your doctor about how to deal with them -- you can come back here and ask for advice too.  But you are unlikely to be a unique case.

Be well and try not to worry -- there's been lots of us down this path and we are here to support 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 drewm

  • Member
  • Posts: 1,037
  • Mmmmmm Hmmmmmm!
Re: My top "What if's" that are driving me crazy!
« Reply #3 on: June 08, 2011, 09:03:01 PM »
Hi COJO...

One at a time:

1. What if my first blood work shows a very high viral load and a really low immune system?

My initial VL was 500,000 and my CD-4 count was 8. One year later I am undetectable and my CD4 is over 325. HAART works!

2. What if I have a drug resitant strain?

There are other drugs.

3. What if I start meds and the side effects are unbearable?

Again, there is more than one regimen.

4. What if I have other infections / conditions? (hep, diabetis etc)

I was also dxd with Syphilis and that was treated effectively. Actually, you will likely be screened for 'everything' under the sun. I suggest this attitude and that is cross the bridge when you come to it. Try not to read 'too much' into your condition and try not to worry. Your health-care provider will be on the ball when it comes to any 'issues.'

Hang in there!  ;)
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Re: My top "What if's" that are driving me crazy!
« Reply #4 on: June 08, 2011, 09:06:18 PM »
Cujo:
Assurbanipal gave you some great answers to your questions and concerns....
You may want to print them out ----- and, if you feel yourself getting stressed out and the questions start dancing through your head again, re-read his sage advice and hopefully that will get you through.

Best to you and welcome!

-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 Betelgeuse

  • Member
  • Posts: 163
Re: My top "What if's" that are driving me crazy!
« Reply #5 on: June 08, 2011, 09:13:24 PM »
May I provide some input here?

When I received my diagnosis almost two months ago, I went into such a bad what-if panic - for a brief moment I actually contemplated suicide (I've never had that tendency or thought before in my life).  I was so scared - and to some extent still am.  It was through a close knit circle of friends, a doctor I truly believe in and these forums that have kept my sanity

One thing I promise you, from one new diagnosee to another, it will get better with time.  Tomorrow will feel just a little bit better than today.  

I was diagnosed with what appeared to be an older infection and therefore had a badly compromised immune system.  I just started medication, but I am happy to report that I have not experienced any side effects.  Your mileage may vary - but most meds I understand are normally very well tolerated.  

We don't expect you to embrace your diagnosis, but do know that tomorrow will be just a little easier - I promise.
« Last Edit: June 08, 2011, 09:30:53 PM by Betelgeuse »
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: My top "What if's" that are driving me crazy!
« Reply #6 on: June 09, 2011, 05:07:16 AM »
Hey folks,

Your responses in my other thread have been so heartfelt and kind, I am beyond words of thanks. It has been just over a week since my + diagnosis and I have a Dr. appointment in a week. In the meantime, I have had tons of "what if..." worries dancing through my mind...dancing is a light term!!

The top four what if worries are....

1. What if my first blood work shows a very high viral load and a really low immune system?
2. What if I have a drug resitant strain?
3. What if I start meds and the side effects are unbearable?
4. What if I have other infections / conditions? (hep, diabetis etc)

I am both frightened but also wanting to get the first data in so I know where I stand...


You will deal with it in the best way you know how and keep on living your life.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: My top "What if's" that are driving me crazy!
« Reply #7 on: June 09, 2011, 09:54:20 AM »
One thing I would like to stress concerning your first question is what Nicolas2 said to you - you can't go on only one set of numbers, it's the trends over time that matter. If your infection is recent, your VL may well come back with a high number, but that's not necessarily going to mean you have to go on meds right away. A high VL - and sometimes a lowish CD4 - are typical of a new infection. So if your VL comes back high, it's not a reason to panic.

One thing you really have to develop with hiv is patience. Hiv takes its time and all the worrying in the world will not speed things up. Just know that whatever the outcome of your initial labs may be, you're going to be ok. Really, you are.
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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

 


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