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Author Topic: We thought my husband had Cancer...much to our surprise, he's HIV+  (Read 272 times)

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Offline marriedgirl77

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  • Posts: 9
Well, thought I'd share our story, for anyone else who may be going through the same thing. 

Back in February, I came down with the flu.  Just a short bout of it, as I'd had my annual flu shot, but hubby had not, so he got the full brunt of it shortly after I'd gotten sick.  He ran high fevers, body aches, cough, the typical flu symptoms, only he had it bad.  Well, weeks went by, and he didn't get better.  The cough went away, but the fever stayed.  He had to go in for a physical in March, and when he stepped on the scale, much to his surprise, he had lost about 15 lbs.  The fever, combined with the weight loss, along with some weakness he'd been feeling, well, he figured it was time to go to the Dr. 

First visit, we saw a Nurse Practitioner, sweet little thing, who decided to run tests for a whole list of things.  Diabetes, Thyroid, CBC, a complete work up.  Everything, except his white blood cells, came back normal.  His WBC count was a little low, but not much, so they didn't think anything of it.  Then they sent him in for a chest xray, a CT scan of his whole body, and a heart ultrasound.  All came back normal.  All of this was over a period of a couple of months.  Another blood test showed that his WBC count was still a little low. 

Then, the doctor we'd been seeing went on vacation, and MY doctor came in to see my husband (it's a family practice, there are a few different doctors).  She said she was going to take a fresh look at him, and see what she could come up with.  First thing she said was "Let's do an HIV test, especially with the low WBC count, it can't hurt to check".  Hubby shrugged and said okay.  My stomach dropped at this point.  I'd been doing the symptom checker thing online, and it kept telling me HIV/AIDS, and I thought to myself, well, but how could he have gotten HIV???  I had been tested in December of 2012 and was negative, so, surely, he was negative too?  The next evening, at about quarter after five, the doctor's office called.  Hubby walked out on the porch, which is the only place we can get cell signal where we live, and I followed, because I knew it wasn't good if they were calling so quickly.  I just had a bad feeling.  The doctor informed him that his HIV test had come back positive.  My poor husband went white.  I've never seen the color drain from someone like that, and I hope to never see it again.  I knew, when his color changed, I knew then that he was positive.  He hung up the phone, and he told me it was positive.  He shook his head and said he didn't understand.  I immediately asked him who he'd been sleeping with, because I had been negative in 2012.  He said nobody, and I dropped it for the moment, went over and gave him a hug, and told him it'd be okay.   Then we immediately tried to figure out how to get me tested right away.  We figured out that nowhere in our puny little town did they carry a home HIV test, so I scheduled an appointment for the next day to get tested myself.  Thankfully, I am, so far, negative.  A few days after the initial blow of the positive result, as we were riding down the road to go somewhere, hubby informed me that he'd had a random blow job at a truck stop by someone looking for $10 in gas money a couple of years ago, and that's how he figured he got it.  This is highly unlikely how he got it, but, that's his story, and he's sticking to it.  Lol. 

His current viral load is 282,000, cd4 is 136, cd4% is 20, wbc is 3100.  Waiting on genotype blood test to come back to see which HIV meds to put him on.  He's still running high fevers, having night sweats, losing weight (he's down to 119 lbs), and has ZERO appetite.  The doctor prescribed me Truvada, but, apparently our insurance doesn't cover it, and it costs $1600.  Going through the company for assistance, but that takes a few days.  We haven't done anything in months, anyway, so there's no rush.  He's just been too sick.  I'd like to think after he gets to feeling better, and I get on Truvada, and his viral count is undetectable, we can pick back up on a great sex life.  The last time we even tried, he couldn't maintain an erection.  The doctor says that HIV can mess with your testosterone levels. 

Oh, and for anyone new here, when you go to your Infectious Disease doctor, see if they'll give you a goody bag.  Ours did, full of condoms and dental dams.  Pretty awesome, at least I thought.  If they give us that every few visits or so, we can get a pretty good stockpile!  LOL.  I thought it was very generous of them to do that.  Condoms can be pricey, and it looks like it's condoms from now on for this couple!   :)

We're still very new to all of this, but if anyone wants to chat, feel free!  If you're new to this too, I'm sure you're going through many of the same emotions that we are. 

Offline mecch

  • Member
  • Posts: 12,817
  • red pill? or blue pill?
Hi welcome here. Sorry this had to happen.
A few things.  Seems strange that an insurance company "does not cover Truvada."  Also, he needs a three drug combo.  Your husband was prescribed truvada + ________?

Truvada alone is for PrEP for you, maybe, eventually.

You shouldnt think there is a lot of time to figure out the access to meds. His CD4s are not good and he should figure out soon how to access reliable treatment - how is he going to get drugs every month from here on out, plus medical care.

Go to a social worker for the county or go to an AIDS Service Organisation and get started on that next week, please.   He needs medicine soon. He probably needs to be on antibiotics as well against pneumonia, but the doc will decide on that.

The flu you describe sounds like his seroconversion.  So he hasn't been HIV+ all that long and the silver lining is now you know and he can get treated and get back his health without much damage.




“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

  • Member
  • Posts: 6,575
  • Google and HIV meds are Your Friends
I had been tested in December of 2012 and was negative, so, surely, he was negative too?
assuming things like this can get you in trouble, as you see. We assumed my partner was HIV negative and he passed away from AIDS because his HIV went untreated too long. This is the reason, as long as you and your husband continue to have sex (and I'm guessing that's why you want the Truvada), you need to have regular HIV tests. Heaven forbid that you become infected (I hope you understand that PrEP, condoms, and him being undetectable, that none of these are 100% foolproof); but if you do get infected, you'll want to know sooner rather than later so that you can begin treatment.

The doctor prescribed me Truvada, but, apparently our insurance doesn't cover it, and it costs $1600.
Truvada as PrEP is still a sorta new concept so getting doctors to prescribe it, much less the funding for it, has been a huge problem.  Technically Truvada is a drug for HIV and your insurance company sees that you are do not have HIV, so their logic is they are not going to cover a drug you don't need for an illness you don't have.

So he hasn't been HIV+ all that long
Quote
His current viral load is 282,000, cd4 is 136, cd4% is 20
I disagree with mecch. That's a high VL and low cd4 (low enough to be AIDS-defining), so it's quite possible that he has been HIV+ for some time (5yrs or more even). HIV stays not quite dormant for many years before spiking (as it heads to causing AIDS) so his viral load has probably been low for some time. Like the chances of pregnancy, every sex act does not mean transmission, so you may have just been beating the odds for some time. ;) It's hard to say; but it also doesn't matter now. Now is the time for y'all to look forward not backwards. There's no way to take back his diagnosis, so y'all have to find the way forward to getting him treated and keeping you protected. It sounds like y'all have the right attitude and help from the right healthcare personnel to do just that.

Quote
Condoms can be pricey, and it looks like it's condoms from now on for this couple!
hopefully y'all will be taking your husband to an Infectious Disease doc, or an ASO (AIDS service org). Agencies like those not only help with treatment access, but they give away thousands upon thousands of condoms yearly. One of the perks of being a volunteer with an ASO is that I have been able to keep my friends supplied in free condoms for years. ;) It really is amazing how many people purchase condoms (I know I did for yrs to use with my partner who we thought was negative) when agencies and health dpts are giving these things away free like candy. :D
leatherman (aka mIkIE)

So we put our hands up like the ceiling can’t hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline marriedgirl77

  • Member
  • Posts: 9
Mechh- the Truvada is for me, for PrEP.  The doctor wanted to get me started on PrEP ASAP.  And, our insurance doesn't cover ANY antiviral meds.  (Thank God for Ryan White Foundation).  We have an Open Access Plus plan that just doesn't cover them.  Craziness.  Yeah, I'm surprised, pleasantly, that I've beat the odds as well.  We thought maybe seroconversion, but with his numbers, we're not sure.  The doc is going to let us know next visit how long he thinks he's had HIV.  He can tell apparently from how his numbers run. 

Offline bocker3

  • Member
  • Posts: 3,625
  • You gotta enjoy life......
Yeah, I'm surprised, pleasantly, that I've beat the odds as well.  We thought maybe seroconversion, but with his numbers, we're not sure.  The doc is going to let us know next visit how long he thinks he's had HIV.  He can tell apparently from how his numbers run.

If you doctor says that he can tell how long your husband has been infected based on his labs -- I'd probably start looking for another doctor!!  There is no way to really know when someone got infected based on lab results -- anything he says is a best guess.  Some people maintain CD4s for years and years, others lose them very quickly, others may go down fast, then back up, then slowly decrease.  You get the picture!

At the end of the day, all that matters is that he IS positive now -- can't imagine why it is important to know how long.  Though, everyone wants to know, for some reason, when first diagnosed -- I know I did, but all I know is I tested neg. in 2001 and tested positive in 2005, so I've narrowed down to a 4 year window!  It matters not at all though -- you have to deal with the present, the past is done and can't be undone.

I hope things go well with your husband's ability to get the meds that he needs.  Hopefully is genotype comes back with lots of options available.

Mike

Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2015 969/28% <20

Offline marriedgirl77

  • Member
  • Posts: 9
You're absolutely right, Mike, at this point it really doesn't matter, but, we would be curious to know...and the doc did mention that it isn't an exact science, but he did say that he could narrow it down.  I am curious as to what he'll say.  I'm hoping, as well, that he'll have lots of options.  Hoping for a one pill a day option (3 in one combo?) That'd be easiest! :)

Offline zach

  • Member
  • Posts: 2,712
  • G,D,Em,C
we would be curious to know...and the doc did mention that it isn't an exact science, but he did say that he could narrow it down.  I am curious as to what he'll say.

Quote
His current viral load is 282,000, cd4 is 136, cd4% is 20

rather than be interested in what he has to say,  ask the doctor how he comes to even a "best educated guess"

doctor already has the only information that can maybe gauge length of infection.

cd4 declines at a somewhat predictable level each year of infection

so what was hubby's preinfection cd4 count? and how many points per year did he lose?

doctor can't answer those two questions.

bottom line, impossible to know even vaguely when he was infected. let it go.

your husband has aids... in addition to hiv meds, he'll be placed on antibiotic prophylaxis to prevent things like pcp and mac.

 
An honest tune with a lingering lead has taken me this far

 


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