what are my survival chances?

[pozguy909]

Where do I start....

I guess it begins last April of 2016.  My boyfriend just came back from a trip to the Philippines.  We were going through a bit of a rough patch at the time and were in an open relationship. After a little bit of fun with a third party, we all decided that we should go for an std test to make sure everyone was good.

It all changed after that

In June, I had thought I was just super sick from getting my blood drawn.  I was home sick when my boyfriend came home saying he was positive. We both could not believe it. I was almost certain I gave it to him.  We cried and we still had to wait for my results to confirm it.  A week later I had to go to the ER because my condition worsened. After the tests, I came back positive from a mono spot test.  I thought I may have been spared, which was also supported that my HIV test came back negative.  I was shocked, relieved and scared all at the same time.

I recovered from what I thought was mono, and In August I used an oraquick to test if I was actually negative. It came back negative, so I thought I was okay.

I wanted to get retested eventually, but life had gotten me busy.  It wasn't until about a week ago I decided to stop waiting and go get tested.  I arranged a test for Tuesday the 8th

I wish now I didn't wait so long.

Tuesday came and after a series of small misfortunes, I was told my rapid finger prick test came back positive.  I could not believe what I was hearing.  After the confirmation test, I knew there was no mistake.  The bullet I thought I dodged had hit me and I didn't know it.

I believed I was ready to hear a positive read, but I guess being told that you are isn't easy for anyone to hear.  From this time, it's been almost a week since I was told of my real status. I am not 100% sure where I am mentally, I just know I want to get on medication already.

I saw my doctor on Thursday and had my blood drawn the same day.  I currently am waiting for the results.

I don't know what I attempt to get out of sharing my story, but I thought I might feel a little better to tell it so someone my read it.

[Jim Allen]

Hi

Sorry to hear you are having a rough time but glad you tested and that you are having a follow up test, because if confirmed you can start treatment sooner.

I know the initial diagnosis can be a head spinning and it can be hard to digest. This will settle with time until than if you have any questions or concerns feel free to ask or vent as we are here to help.

From your post and testing history I understand you had some exposure at some moment post April 2016 (you tested in august - 3 months) and recently you had a reactive rapid test and positive Elisa test. So for the moment I will ask you to stay in this thread until you have results from your Thursday blood draw that will confirm the initial Elisa.

I've included links on newly diagnosed and treatment that are informative yet easy to digest should you be looking for reliable information.

https://www.poz.com/basics/hiv-basics/newly-diagnosed

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment

Take it easy

Jim

[pozguy909]

i just got my results of my blood drawl.  after 1 year of infection, i have a cd4 count of 26 and a vl of 339866.  my doctor says my kidney and liver functions are normal, but he is not a specialist.  i know i need treatment asap, but am I in danger of dying?

[pozguy909]

after apprix. 1 year of infection, my cd4 is 26 and my vl is 339884.  what are my survival chances at this point?

[Almost2late]

Sorry to hear of your diagnoses.. it's a hard pill to swallow but you need to get on treatment right away bc like myself you've been diagnosed with advanced stage of hiv..

The good news is once you get on it you'll get the virus under control and as your viral load goes to undetectable levels, your cd4's will rise..

Work with your doctor on this, the sooner your on treatment, the sooner you'll be able to live a healthy life..

I would add that once you are on treatment, your chances of survival are very good.. Wishing you the best of luck.

[pozguy909]

I'm just amazed that my cd4 is so low only after a year....

[Ptrk3]

Since your CD4's are below 200 and your viral load is not "undetectable," you need to be on antiretroviral treatment and the appropriate prophylactic treatment for potentially life-threatening opportunistic infections as soon as practicable.

If your current healthcare professional is unable to or lacks the knowledge to prescribe you appropriate treatment, ask him to refer you to an infectious disease physician.  You need to do this now.

Once in appropriate care, and your adhering to an appropriate antiretroviral regimen, you have excellent chances to live a long and healthy life.

Do not delay treatment any longer.

[pozguy909]

I already have an appointment for friday, and they said i cN be on meds by the 1st of september.  But since my cd4 is so low, I'm surprised i cant get anything sooner

[virgo313]

Hi pozguy909,

You will be fine very fast. Do stay calm & just take the med on time daily.
Antiretroviral med works very well & your VL will drop fast.

Don't worry/talk about "survival", you are not in hospital.
Wish all the best. Thanks

[zach]

You're not going to die... you're not going to die by September.

It's OK to wait for meds, when you get them take them as instructed.

Your viral load will drop fast, not even an issue.

Your cd4 will recover, be patient with that.

When you first go on meds, you're likely to feel pretty shitty. Thats the meds and your body fighting HIV, those minor side effects fade quick, stick it.

You're about to get in a fight with the bug, make it your bitch

[Wade]

Hi Pozguy,

Sorry to hear about your recent diagnosis, but as the others have said it's not the end of the world and you'll be fine. Treatment has come a long way.

Now is the time to prepare for your first appointment with your doc.
Write down any questions you my have as the first visit can be a little overwhelming and may be quick.

Also here is a chart of meds to look over and print out if you can and take with you .

https://www.poz.com/drug_charts/hiv-drug-chart

Be Well,

Wade

[pozguy909]

In this time, should I avoid over the counter medication such as ibuprofen, sinus and allergy pills and antacids?

[Ptrk3]

There's no reason to avoid over the counter drugs at this time.

When you are prescribed an appropriate antiretroviral medication, ask the doctors what other medications, if any, need to be avoided.

[Almost2late]

Glad to hear you've got your appointment for Friday..
As for over the counter meds, I'd just do as I normally do until the doctor tells you different.. so if you got a headache I don't think there's anything wrong with taking a Tylenol or whatever just take as directed..
You re going to be fine after you're on treatment, I know it.. please let us know what happens.

[pozguy909]

Do you think having mono at the same time as hiv infection has affected my cd4 so negatively?

[kentfrat1783]

Hi,

This thread has changed a bit but here are my thoughts:

1)  Take it a day at a time.  Just getting this diagnosis is hard to swallow but you will be OK.  Talk to your ID doctor and keep up with your primary care doctor.  Your questions may be common to the doctors but they aren't to you.  Ask and don't be embarrassed. 

2)  Don't forget it isn't the 1980's or even the 90's anymore.  The medications help, and some people are better educated. 

3)  I learned about my Dx while laying in a hospital bed with PCP.  They confirmed the pneumonia (PCP) prior to even figuring out that I was positive.  But when they learned I had PCP they knew what gave it to me.  My CD4 count was only "2".

Now what my ID doctor and specialists said that came to see me while in the hospital bed wasn't the best things, but then again they weren't sugar coating anything.

4)  I've been on 2 different Rx's now for over 4 months and on Atripla just starting my 3rd month of it (with the other Rx's).  I feel a lot better then I was.

I go back the end of next month for my 3 month followup and to get my CD4/Viral load rechecked.  (After being on the Atripla for 3 full months)

5)  It isn't the best news to get but even as my primary care doctor stated it to me, it's only a condition.  Made me feel a bit better.

Wishing you all the best.

Kenneth 

[Ptrk3]

pozguy909:  yes, it is possible that mono could have a marginal effect on your CD4 count, but what difference does that make, really?  Your CD4 numbers are what they are and that's your baseline for recovery.

What's important is that in the near future that you are placed on an effective antiretroviral regimen that will quickly reduce your viral load to "undetectable" (and an effective antiretroviral regimen will reduce your viral load, I assure you, and do so quickly) in order that your CD4's begin to rise (and they will rise).

That is how your recovery begins.

You will be fine, once you begin treatment.

[pozguy909]

Thank you everyone for taking the time to read my post and answering some of my concerns and questions. This has been the most stressed I've ever been in my life. It is literally been the hardest eight days I've ever had. I know my situation is not unique to me and many others have gone through similar situations. But it helps to know that the kindness of strangers that still exist and it has helped me through this very difficult time. I have the emotional support of my boyfriend but even he can do everything by himself. I want to thank everyone who has supported me

[pozguy909]

Just one other thing,  this doesn't mean AIDS right?

[Ptrk3]

Well, to be bluntly honest, the current definition of Aids (in the United States), by the CDC, includes those with a CD4 count of less than 200. 

But, practically speaking, since clinical perceptions have changed since that demarcation, the spectrum is more along the lines of progression of HIV infection (i.e., those with a CD4 of less than 200 have "advanced" HIV infection). 

As such, HIV infection is "fluid."  One can have "advanced" HIV infection, then be in "remission," just as one can move back and forth from other medical conditions.

If it provides helpful perspective to you, I was diagnosed in hospital in August 2013 with pneumocystis pneumonia and a CD4 of 9, viral load of 110,000.

Though I "technically" may had Aids, and will continue to have Aids (as long as the CDC continues its current definition), no healthcare provider has ever uttered that word to me, ever, even as I was gasping for breath (and, by the way, even as I was doing so, I felt fine and continued to chat on the phone with friends and family and eat heartily--just felt weak, tired, out of breath).

More than four years on, I continue to feel well and to go about my life, freely taking the time to help people like you, those recently diagnosed with a treatable condition that will not impair your ability to live a long and healthy life, as long as you adhere to your soon-to-be prescribed medical regimen.

Thanks to my daily adherence of Atripla (never having missed a dose), I have an undetectable viral load--for three years and eight months--and a CD4 safely above 200 (beyond the reach of most opportunistic infections).

Truly, don't get wrapped up in the axle of nomenclature: words are just words.  Words do not define you. Your substance is more than words.

What matters most is how you feel and how you are going to live your future long and healthy life: feel your existence and be resolved.

Things do get better.  They really do. You will, too.

Look forward, accept things as they are, adhere to your antiretroviral regimen,  live a glorious life.

A diagnosis is a beginning, not an end.  Move on.

[Jim Allen]

I agree with what Patrick posted above, try not to overthink this and no need to panic.

Go to your next appointment get some updated lab results, work with your doctor on deciding the best treatment option for you and start taking the meds, than be adherent to taking them and go to any appointments you have. 

Not much more to it, just focus on living your life.

Jim

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://www.poz.com/basics/hiv-basics/newly-diagnosed

[pozguy909]

Thank you for all the support you guys are giving.   Its really hard to fight this because of the depression, anxiety and the fatigue ive been feeling.  I know this is mostly from hearing the news of my status and its mostly in my head.   I need to jeep hearing the right things to get me on track.   I want to live, i will fight on.  Im juat an impatient person and hate waiting for things to happen.

[Ptrk3]

This music video should give you some strength.  This (unannounced) performance closed out the 2001 Emmy Awards, just a week or so after the terrorist attacks in New York.  Its message applies, too, to those newly diagnosed.  I'll post it in the Song of the Day thread, also:

https://www.youtube.com/watch?v=4RYUp7gYHwg

[pozguy909]

Hey all. Just wanted to give an update.  I start genvoya tomorrow and i have two antibacterials!  Im looking forward.  Thanks for all the support!