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Author Topic: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo  (Read 1151 times)

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Offline MalumEnSe

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Hello! I've been lurking for a while, but always have questions or want to hear other people's experiences and advice and what to expect, so figured I would post. I'll try not to ramble too much...

My boyfriend and I have been together for 3 and a half years, both 35, and he was diagnosed with HIV 6-7 weeks ago while seeing his doctor about unusual swelling, fevers, and shortness of breath. It was a bit of a surprise since I tested negative the week before, and am still negative as of this week. I'm not sure how this is possible since, given the seriousness of what was to come, most likely he's been positive for long before I met him and that this was not initial acute infection.

A week and a half later, on July 17th, he was instructed to go to the hospital for kidney failure, which turned out to be a condition called glomerulonephritis. At this time he found out his CD4 level was at 195, and got the AIDS diagnosis. Being so compromised, the usual treatment (immunosuppressants) were not an option. He went through about 6 rounds of dialysis over two weeks before the kidneys stabilized for now.

A month and a few days later and he is still in the hospital, also diagnosed with histoplasmosis and CMV. He's already completed his treatment of Amphoteracin B and is now on itraconazole, as well as ganciclovir (amongst other things for pain, anxiety, etc.). We're finally about to start his HAART medications today which will be Sustiva, zidovudine (AZT), and lamivudine (3TC). At this point it's kind of a waiting game to see how the meds complicate kidney function and whether he'll have to go back on dialysis permanently.

So that's the back story. His CD4 count as of this week was 400 and his VL is 330,000 which seems odd since he hasn't started treatment and is a big jump in just 6 weeks, has anyone seen something similar with just getting OIs under control and treated?

And has anyone around here experienced these kinds of serious OIs all at once? How likely is it that he'll ever get back to "normal" and be well enough to go back to work and get back to life? What kind of things should we be watching out for in the future? What kind of specific questions should I be asking doctors? (I'm a bit of a control freak and just really want all the info and knowledge I can get)

His mood is decent, sick of being in the hospital, sick of being on a renal diet... but he doesn't seem to be very... "invested" in what is going on. It's not that he's given up or in denial, just isn't putting forth much effort into learning about these conditions, won't even look up info about the meds, stuff like that. I'm kinda the brains behind this operation right now and I feel like I'm in it alone and don't know how to get him to get on board and help himself get better.

I know I'll have a bazillion questions and looking for insight from people who have been in this situation on both sides of the fence, I just wanted to jump in and say hi. :) Feel free to ask about any more details, that all was the quick version, and it helps to be able to talk about all this.
« Last Edit: August 21, 2014, 09:05:30 AM by MalumEnSe »

Offline Miss Philicia

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #1 on: August 21, 2014, 09:27:54 AM »
It's odd to have had that number of OI's when he was diagnosed with ~200 cd4 count. It would not, however, be odd at single or double digit counts upon diagnosis. So his immune system, while damaged, isn't as bad as you it may seem -- proof being that he's recovered to 400 in the absence of HAART treatment. Odd indeed, but why question a gift -- right? If 195 is the lowest (nadir) that he has had and is now up to 400 on his own, his immune system has a better chance of recovering in a decent amount of time than is typical in these situations when one is diagnosed and presents with multiple OIs in an extended hospital setting.

Also, may I ask what country he/she is being treated in? The use of AZT is not usual for most countries.

As far as how long he has been infected, as you state you both had just undergone routine testing -- does this mean during the past 3 years you both had routinely been screened for STDs or was this the first time?
"I’ve slept with enough men to know that I’m not gay"

Offline MalumEnSe

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #2 on: August 21, 2014, 09:50:41 AM »
Thanks for replying and for your thoughts! I agree that everything is very odd, but the histoplasmosis was pretty acute and had infected many organs, and the CMV was confirmed to be active as well, not just having antibodies present. Very odd from everything I had read, which is why I'm here to see about others' experiences! :)

Also, may I ask what country he/she is being treated in? The use of AZT is not usual for most countries.

This is in the US. As far as I can tell, the ID specialist chose this combo because of how precarious of a condition his kidneys are right now which made something like Atripla not an option since it was harsher on renal function. His creatinines are still in the 2.0 range.

Quote
As far as how long he has been infected, as you state you both had just undergone routine testing -- does this mean during the past 3 years you both had routinely been screened for STDs or was this the first time?

I had been tested a few times during our relationship, and before. He said he had been tested just 4 months ago during a doctor's visit, but this turned out to be a lie. He had never been tested before in his life until the one that came back positive 7 weeks ago. Obviously this has cause some resentment issues on my part, but I'm trying to keep that and any anger out of the picture for now until his health improves and it can be hashed out.

Offline DallasJ

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #3 on: August 23, 2014, 02:43:24 PM »
he doesn't seem to be very... "invested" in what is going on. It's not that he's given up or in denial, just isn't putting forth much effort into learning about these conditions, won't even look up info about the meds, stuff like that. I'm kinda the brains behind this operation right now and I feel like I'm in it alone ...
Me and mine are in a similar situation.  Together 4 yrs,  I tested poz with very low cd4 after being sick from CMV in my intestines/colon and having a bad case of shingles and skin rashes, he tested negative.  I know I was thinking I was going to die at first (realizing i had AIDS without even having time to adjust as being HIV+ first) and tried to keep a brave face for him.  But I was terrified and didn't want to talk too much about it. Plus I was (and still am) half expecting him to bail on the relationship.  I had a tremendous amount of fear, embarrassment, and guilt.  Maybe he is feeling some of what I went through and seems not invested because of his internal fears. 

I'm glad he has you to help him through this.  He probably needs you more than you know.  Stay strong.  Hopefully with time he will open up more.

I admire you for being strong in a difficult situation.
7/7/14: tested positive
7/11/14: started Atripla
7/16/14: CD4 = 15, VL = 1,100,000
8/27/14: CD4 = 46, VL = 210
10/29/14: CD4 = 30, VL = 120

Offline MalumEnSe

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #4 on: August 23, 2014, 05:03:59 PM »
Thanks a lot, Dallas. You're most likely right, it's such a huge shock for me to go from fine, to HIV+, to hospitalized with AIDS, histo, CMV, and looking at a lifetime of dialysis all in the span of two weeks, I can't imagine what it is like for him. Especially since he's the one that has to sit in a hospital room 24/7 for over a month alone a lot of the time. The things that must go through his head...:(

He's always been the ostrich type, would rather put his head in the sand than deal with anything, be it bills, chores, confrontations, etc. Meanwhile I'm the type that latches on to any problem and gets almost obsessed with it until it's taken care of. Guess that's why I'm here doing some of the heavy lifting for now when it comes to being educated and prepared. ;)

I hope things are good with you and your partner! Seems like we ARE in a very similar situation, mine was diagnosed positive the day after you were. If you don't mind me asking, do you think you'd been undiagnosed for a long time?

Offline mecch

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #5 on: August 23, 2014, 05:42:01 PM »
it's such a huge shock for me to go from fine, to HIV+, to hospitalized with AIDS, histo, CMV, and looking at a lifetime of dialysis all in the span of two weeks, I can't imagine what it is like for him. Especially since he's the one that has to sit in a hospital room 24/7 for over a month alone a lot of the time. The things that must go through his head...:(

I am sorry this has arrived in your couple. I'm very sorry you have to go through this shock.  Also, your bf must be in a terrible state.

As you know, and as we know by the story/history related above, your bf was NOT fine... It was a mirage built on denial and also lies... 

Im not surprise he's not invested in whats going on now - understanding all the issues and digging in - because he was in complete denial.

Its just not rational or sensible to go about an adult gay life without regular testing...   People do it, for all sorts of reasons, but its not rational. 

So not only does your BF have the shock of diagnosis, the shock of being in such horrible shape.  But also, his M.O. - how he lived his life - has been undercut.  Perhaps too (hopefully?) he's dealing with the guilt and horror of having lied to you and put you at risk.

There is going to be a lot to rebuild, here.   :-[

___

PS  -  who said he faces a lifetime of dialysis?  yikes. Are you sure?

PPS - Stay strong and you're a good soul to stand by your man and deal with the relation issues when things are a bit calmer....
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MalumEnSe

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #6 on: August 23, 2014, 06:17:59 PM »
Quote
As you know, and as we know by the story/history related above, your bf was NOT fine... It was a mirage built on denial and also lies...

You're right, but I honestly don't think he suspected HIV. But then again, maybe he did... I always tested negative so he figured he was fine, and even didn't get tested in the past when he said he did while doing a doctor check up. Like you said, I really hope you're right that all this will change his mindset and the way he goes about life for the better when it comes to being honest with himself and others and just being more responsible over all.

Quote
PS  -  who said he faces a lifetime of dialysis?  yikes. Are you sure?

That came from the nephrologist, ID specialist, and his primary care physician. Lifelong dialysis was/is a strong possibility after getting the nephritis diagnosis after the kidney biopsy. His creatinines were above 8 which is extremely high. After 2 weeks of dialysis these are down around 1.80 and seem to be holding steady and slowly dropping with a very controlled diet and fluid intake. All the doctors were pretty surprised he was able to maintain off of dialysis.

The deciding factor on whether or not he'll go back on dialysis is how harsh the HIV meds are going to be on his kidneys over time. Which is why I was really glad to hear about Triumeq getting approved yesterday, he won't be able to tolerate anything with tenofovir so this will be a great option once it rolls out!
« Last Edit: August 23, 2014, 06:20:45 PM by MalumEnSe »

Online Almost2late

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #7 on: August 23, 2014, 06:25:09 PM »
Hi Malum,

Sorry to hear about your boyfriends dx.. I think if your boyfriend is not allergic to Triumeq, that might be the best if the doctor thinks so also..

Just wanted to share a link that helped me when I was first diagnosed, hope it will help you and your boyfriend... Good luck  :)

http://www.aids.gov/hiv-aids-basics/staying-healthy-with-hiv-aids/potential-related-health-problems/opportunistic-infections/

http://www.hivplusmag.com/just-diagnosed/2014/03/07/15-ways-live-be-100-when-you-have-hiv?page=full
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline mecch

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #8 on: August 23, 2014, 06:29:36 PM »
I always tested negative so he figured he was fine, and even didn't get tested in the past when he said he did while doing a doctor check up. Like you said, I really hope you're right that all this will change his mindset and the way he goes about life for the better when it comes to being honest with himself and others and just being more responsible over all.


Well its water under the bridge now.  But the above underlined is just silly, not very clever at all. He knew he wasn't getting tested regularly, and also he lied about it to you.
IMO denial and fear of HIV can run pretty damned deep.
Now that its all in daylight, I would guess there might be revelations to come but it might take time.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline DallasJ

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #9 on: August 24, 2014, 04:39:59 AM »
If you don't mind me asking, do you think you'd been undiagnosed for a long time?

I used to get tested regularly, so I know the window of time was 4 to 4 1/2 years ago.  Me and my husband have been monogamous the past 4 years.
7/7/14: tested positive
7/11/14: started Atripla
7/16/14: CD4 = 15, VL = 1,100,000
8/27/14: CD4 = 46, VL = 210
10/29/14: CD4 = 30, VL = 120

Offline MalumEnSe

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #10 on: August 24, 2014, 03:02:38 PM »
I used to get tested regularly, so I know the window of time was 4 to 4 1/2 years ago.  Me and my husband have been monogamous the past 4 years.

It blows my mind just how much a roll of the dice this can all be. I don't know how he could have been positive this entire time and somehow I dodged the bullet for over 3 years having unprotected sex. I feel a bit guilty about it, I've always been the really promiscuous one while he's had barely a handful of partners in his lifetime. I have a lot of "it shoulda been me" thoughts going on.  :-\

Offline Miss Philicia

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Re: Partner recently diagnosed with HIV/AIDS, hospitalized, CMV, Histo
« Reply #11 on: August 25, 2014, 09:28:09 AM »
It blows my mind just how much a roll of the dice this can all be. I don't know how he could have been positive this entire time and somehow I dodged the bullet for over 3 years having unprotected sex. I feel a bit guilty about it, I've always been the really promiscuous one while he's had barely a handful of partners in his lifetime. I have a lot of "it shoulda been me" thoughts going on.  :-\

Perhaps you're one of the lucky (very) few that have have the genetic mutation CCR5-delta32 that gives you a defense from being infected easily.

http://en.wikipedia.org/wiki/CCR5
"I’ve slept with enough men to know that I’m not gay"

 


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