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Author Topic: Worried About Progression  (Read 3627 times)

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Offline Torey

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  • Posts: 18
  • Anticipate Miracles
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Worried About Progression
« on: May 26, 2008, 10:39:11 PM »
Hi, all  :)

I was diagnosed in January of this year, but from my reckoning I was infected about two years ago.

I have had a hard time lately and have not been consistent in getting blood work to see what my current levels are at...and I have seen quite a few people here who have mentioned progressing quickly to AIDS within only two or three years time from the date of infection.

And my health has been terrible for a long time as I am mentally ill and have neglected my well-being for many years.

So what I'm saying is...I'm feeling a bit in denial...and so do you think that I'm doing the wrong thing by not being checked regularly?  Some of my family led me to believe that I didn't need to worry about it for a long time so the numbers 'don't matter now'.  What do I do?   :(
Seroconversion 2006 (?)
Jan 08 - CD4 409 (28.5%)  VL-10,000
May 09 - CD4 297 (19.2%) VL-92,000
October 09 - CD4 244 (15.2%) VL-116,000
December 09 - CD4 239 (13.5%) VL-142,000
(No Meds)

Offline Miss Philicia

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  • Posts: 23,874
  • celebrity poster, faker & poser
Re: Worried About Progression
« Reply #1 on: May 26, 2008, 10:54:46 PM »

So what I'm saying is...I'm feeling a bit in denial...and so do you think that I'm doing the wrong thing by not being checked regularly?  Some of my family led me to believe that I didn't need to worry about it for a long time so the numbers 'don't matter now'.  What do I do?   :(

Hi Torey,

Short answer: yes, it's never a good thing to let HIV go without being checked regularly.  If you were diagnosed in January do you at least know what your blood work HIV numbers are? (CD4, CD4% and viral load) 

Those individuals with mental health issues face an extra challenge in dealing with HIV, as it makes things more complicated.  I hope that you will take the opportunity now to make an appointment with your HIV specialist, and also that you are having regular appointments with a mental health professional, and you may wish to supplement this with attendance at a support group where you will find you are far from the only individual to indulge in a bit of denial.

Regular jaunts to the HIV doctor is your best safeguard against a more complicated life with HIV.
"Iíve slept with enough men to know that Iím not gay"

Offline Torey

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Re: Worried About Progression
« Reply #2 on: May 26, 2008, 11:11:13 PM »
Thank you so much for the quick response, philly267  :)

My numbers were cd4 = 409 % = 28 vL = 10K  I am about to move out of the country soon and it's hard to know what to do with my family telling me one thing and reading so many other things.  :(  My mental health issues have been long-standing and only worsened now and I suppose it's a lot easier for me to sit around in denial than to get up and be proactive about things.  I am grateful for your response...and for finding POZ as I would never have known that one could progress so quickly.  :-[
Seroconversion 2006 (?)
Jan 08 - CD4 409 (28.5%)  VL-10,000
May 09 - CD4 297 (19.2%) VL-92,000
October 09 - CD4 244 (15.2%) VL-116,000
December 09 - CD4 239 (13.5%) VL-142,000
(No Meds)

Offline Miss Philicia

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  • Posts: 23,874
  • celebrity poster, faker & poser
Re: Worried About Progression
« Reply #3 on: May 26, 2008, 11:21:58 PM »
Well, for one thing on what authority is your family speaking?  Whatever it is it's BS, dear.  With 409 cd4 you need to be checked at least at 3 months intervals.  So you're only 1 month overdue.  Numbers decline with HIV -- whether somewhat slowly or faster.  That's why they must be monitored, especially at that level and considering you are not on any meds yet.  The last thing you want is to go in and find they've been low for months.

Families are GREAT for emotional support, but you need a doctor's advice and your OWN judgement with HIV, not a third party that knows nothing about your own body or the subject of HIV, even if they claim to be googling things on the internet for you or whatever.

Please take the time this week to make an appointment, OK? :)  Good luck.
"Iíve slept with enough men to know that Iím not gay"

Offline Torey

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Re: Worried About Progression
« Reply #4 on: May 26, 2008, 11:25:43 PM »
Thank you so much, philly267  :)  My family is quite harsh towards me about the entire ordeal and I get little or no support from them.  I should really know that they don't have my best interest at heart and more rather promoting their own denial by telling me 'I'm fine'. 

I apologize for the newb questions  :-[

I will do as you ask and I can't thank you enough for your help.  Blessings to you  :)
Seroconversion 2006 (?)
Jan 08 - CD4 409 (28.5%)  VL-10,000
May 09 - CD4 297 (19.2%) VL-92,000
October 09 - CD4 244 (15.2%) VL-116,000
December 09 - CD4 239 (13.5%) VL-142,000
(No Meds)

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: Worried About Progression
« Reply #5 on: May 27, 2008, 11:26:26 AM »
What Philly said.  Get tested regularly.  Good results will give you peace of mind, and bad results will give you the knowledge you need to maintain your health.  It's much easier to keep what you have, than try to regain it after it's gone.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline dusty99

  • Member
  • Posts: 103
Re: Worried About Progression
« Reply #6 on: May 27, 2008, 05:50:22 PM »
Your CD4% is good, as I have found out from Peter about mine. You are not to far from what mine initially was, which is great. I am new to this as well, so I understand your concern. No matter what anyone's numbers are I would think it would be in their best interest to get checked regularly so as to be proactive in their care. Your CD4 is on the lower scale, but the % is very good and your VL isn't too bad. so, for now If I were in your situation, I would get the regular blood work and keep an eye on things with your doc. Get a support element started wherever you are. You will need it. and stay on here and ask all the questions that come to mind. People on here are more than happy to answer any questions you have. This has certainly been a great help to me and made me feel much better about my situation. I hope that is does the same for you. Good luck and hope to see you around the posts.
17 Mar 08: diagnosed
31 Mar 08 CD4: 565,  30%  VL: 28,900
21 May 08 CD4: 600,  37%  VL: 13,000
25 Oct 08  CD4: 308   34%  VL: 68,000
19 Nov 08 Started Atripla
16 Dec 08  CD4: 580   42% VL: 70
27 Jan 09  CD4: 490   41%  VL: undetectable
24 Mar 09  CD4: 565   42%  VL: undetectable
30 Jun 09  CD4: 615    41% VL: undetectable
25 Sep 09  CD4: 595    47% VL: undetectable

Offline Torey

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    • MindUnite.Com
Re: Worried About Progression
« Reply #7 on: May 27, 2008, 07:06:38 PM »
Bless all of you for your kind words.  :)  I am rather shy about posting, but I feel much more secure now and this place is a godsend.  May you all be blessed.  *HUGS*
Seroconversion 2006 (?)
Jan 08 - CD4 409 (28.5%)  VL-10,000
May 09 - CD4 297 (19.2%) VL-92,000
October 09 - CD4 244 (15.2%) VL-116,000
December 09 - CD4 239 (13.5%) VL-142,000
(No Meds)

Offline aztecan

  • Member
  • Posts: 5,382
  • 29 years positive, 56 years a pain in the butt
Re: Worried About Progression
« Reply #8 on: May 27, 2008, 10:52:53 PM »
Hey Torey,

Philly, et al, are right on the money. With HIV, it is important to know where you stand and how things are going if you are to make wise and well-informed decisions.

Whether you progress quickly or slowly depends on so many factors, not the least heredity and lifestyle, there is no way anyone could predict how fast the HIV in your body might take its toll.

Be good to yourself. Get checked regularly.

I've been poz a long time and the only thing I can promise you is you will be much happier if you live each day to the fullest possible degree.

But its hard to do that if you don't know where you stand.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Peter6836

  • Member
  • Posts: 391
  • Me and my Granddaughter Noa
Re: Worried About Progression
« Reply #9 on: May 28, 2008, 10:16:39 AM »
Torey,
I have no medical background for anything I am about to say. All I can tell you is what I have experienced.
I was a fast progressor as far as HIV goes by the time I was diagnosed I had AIDS and I was tested yearly. I noticed that my mental health issues got worse as my cd4 count dropped. One of the first sympthoms of my HIV was a worsening in my mental health. I was diagnosed with bi-polar disorder years ago.
Saying that I have to agree with what everyone here has told you. Keep up with your doctor visits. Watch all of your numbers. I find that seeing my doctors regularly, and that means my GP and psychiatrist as well as my ID keeps things in balance. If you can find doctors that work together it helps even more. I see doctors all within the same hospital all my records and blood work and tests are accessable to each of my doctors via computer. In that way my meds are kept under control and I am able to live a much more productive and higher quality of life.
Take good care of yourself. Do what is right for you, not what others that do not live in your body tell you. Do some research and seek out good qualified medical help that you are comfortable with.
Welcome,
Peter

Offline Torey

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  • Posts: 18
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    • MindUnite.Com
Re: Worried About Progression
« Reply #10 on: May 28, 2008, 09:59:57 PM »
*HUGS*  Thank you both, Mark and Peter  :)  I am feeling a lot better about doing this after having all of your feedback.  I have to confess that I pretty much have had no support save my partner and a few friends.  It's just awfully nice to hear these things from folk who have been there, ya know?  Many blessings to you all and I will update you for certain when I get seen to.  *HUGS*
Seroconversion 2006 (?)
Jan 08 - CD4 409 (28.5%)  VL-10,000
May 09 - CD4 297 (19.2%) VL-92,000
October 09 - CD4 244 (15.2%) VL-116,000
December 09 - CD4 239 (13.5%) VL-142,000
(No Meds)

 


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