POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: jager on March 04, 2011, 11:05:43 am
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Hey, I'm new here. I guess I'll start with a little background
Diagnosed as HIV positive 11-26-2010 (The day after thanksgiving after spending a week in the hospital with bacterial pneumonia) CD4 Count at that point was 14 (yes, double digits), and I don't recall the viral load (High i'm sure though) Was also kicked out of the house for the next couple months because the doctors at the hospital told my fiance that I got HIV in the last 6 months. (Impossible I know) Actually wondering if I should attempt to sue them? I have a bit of an anger problem though, and anytime I think of it, it infuriates me, so I kinda just want to move on, but at the same time it really pisses me off that it happened.
I was retested on 1-13-2011, CD4 count had gone up to 25, and I don't recall the viral load then either ( I have them somewhere, but don't recall)
Started Atripla 1-13-2011
2-24-2011 Did blood work, and CD4 count went up to 190, and my VL was 1100
That was pretty shocking, as I didn't expect the numbers to jump up that quickly. If there is anyone that has AIDS (below 200) that wouldn't mind talking a little, I could really use someone to talk with. Just general stuff really. I'm 28, and thought I was healthy before being hospitalized with pneumonia, and subsequently diagnosed with AIDS. I have various questions about things that really only someone who has had HIV or AIDS for awhile could answer. I keep asking people, and trying to read things online, but much of it doesn't necessarily apply to someone with a CD4 as low as mine. Really just need someone to shoot questions too if I can.
A couple other things, First, I was shocked to see my CD4 jump that high after about 5 weeks of taking the meds. Is that normal? Also, and I know its different for everyone but..., What's a realistic CD4 for me to get to? Do people with CD4's of 14 starting out actually get back to "normal", which I guess is 700-1000? Definitely before this last appointment I was extremely scared, and felt like I found out too late. Still really scared about the whole thing, but seeing my numbers improve that much certainly makes me feel a bit better.
Next, With the whole HIV / AIDS differential, should I expect to have a shorter life because I found out so late? I've talked to people with HIV and they say no, but at the same time I don't meet many people that had AIDS when they found out, so it could be different.
Any feedback would be appreciated
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Jager,
Welcome to the forums.
I've moved your thread into the "Just Tested Poz" forum, which is the more appropriate place for it. Don't worry, members with more experience do post there (here) to help new people out.
You didn't necessarily find out late. It is totally possible that a recent infection, coupled with non-hiv-related bacterial pneumonia, could cause such a low CD4 count. It is common in early infection for the CD4 to be quite low and the VL very high.
Your recovery from the pneumonia coupled with a newer infection and the initiation of hiv therapy could also account for your nice CD4 rise. Lots of people - especially people with newer infections - experience big rises in their CD4s only weeks after starting meds.
It's hard to say what anyone's CD4s will rise to - a lot depends on what your CD4 levels were like prior to infection. "Normal" could be anywhere from 500 to over 1200, and a CD4 of 500 is considered to be that of a normally functioning immune system.
Whenever you were infected, what's important now is that you are taking steps to keep your hiv under control.
Ann
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A quick question, is not being able to sleep a normal thing with AIDS? I haven't been able to sleep for awhile now anyway, but I have heard AIDS can cause sleeping troubles. Sometimes it's not too bad, and I will sleep through the night, but that's very rare. Most of the time I wake up often during the night (sometimes 5 to 10 times). Sometimes I have to pee, but not usually, usually I just wake up a lot.
Next, as far as the mental issues people face, I get very mad very easily. Not to the point where I'm so out of it that I will do something stupid to get me put in jail, but basically I don't care what I say or who I say it to, and the smallest thing can set me off, then 10 minutes later I'm perfectly fine again. Some might say I have an anger problem, frankly though, if people weren't so stupid I wouldn't get mad so often. lol. Really, it's just been a long few months. My stress level has been through the roof. I'm going to the psyche doctor to talk with them about me getting mad, but really I don't care that much about getting mad, but I'm afraid I'll give myself a heart attack if I keep going the way I am.
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Sounds like typical depression and anxiety issues causing a short temper and bothering normal sleep patterns. Try keeping a journal in advance of your psych appointment and taking it to the doctor.
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Hi jager and welcome to the forums , its a great place for your questions and support you may need .
Your sleep issues could be caused by the Atripla , I have been on atripla for many years and that is one of the side effects that I cant seem to shake .
Its good to hear that you talking to a psyche doc about your anger issues and learning about new ways to cope that are more healthy in nature . Good luck , stay strong .
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Welcome to the forums Jager
I was diagnosed with AIDS in the hospital almost 5 years ago now. You can see my history of drugs and tcell counts in my signature line below. I also had a good initial reponse to the medicines and my immune system is pretty much back in the normal ranges at this point. And I'm almost twice your age...
Are you on Bactrim or something to prevent a recurrence of pneumonia? You should be, if your tcells are under 200. I found it made it hard for me to sleep and really irritable. (Of course, AIDS, the oxygen tube, etc. didn't exactly make me happy either :-) )
As far as the future is concerned, a lot of people who start off with low tcell counts do just fine. Recent studies suggest that if you can get the tcells back into the normal range your life chances and life expectancy are likely to be pretty much normal.
But the first year can be dangerous and you should take care of yourself. It's not just the danger of having a low tcell count and getting an opportunistic infection now. You also need to take time to get comfortable with taking your drugs every day, building back your health and seeing a doctor a lot more often than you are used to. A lot of your future health will depend on your ability to step back and make some changes. There's some luck involved too It's worth taking seriously. But lots of other people have been there and done just fine.
Be well
Assurbanipal
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Taking the meds are a non-issue. Frankly, I was so freaked in general that I couldn't wait to start the meds. lol. I don't think the not sleeping thing is from the Atripla as I've had trouble sleeping for awhile now, realistically a year and a half to two years before I was diagnosed. Generally I sleep 4-5 hours a night, and it's not very good sleep at all. I've been told I have sleep apnea, and will be going to a sleep study before too long.
As far as meds, I was put on Azithromycin and Bactrim, then the bactrim was changed to dapsone ( i had a little itch and slight rash, but we don't think it was that as I still have it after switching), and of course the Atripla. Taking the meds aren't a problem for me though. Frankly if they will make me have a better life, then I'm all for taking a couple pills. The Azithromycin was because my tcells were below 50.
As far as the psyche doctor goes, I really don't think it will help much. I consider myself a smart person, and in control most of the time, and I get mad often, but at the same time people do stupid stuff that pisses me off often as well. lol. Really the past 5-6 months have just been really really tough. My fiance (who found out she was positive as well after I found out) and I moved to a new state in August of this past year. It's been nothing but headaches since moving, with our apartment complex, doctors (although the doctors I'm seeing now at John Hopkins have been great), college, and of course all the disease stuff. To top it off, the doctors at a different hospital in Baltimore told my fiance and her mother that they thought I got it within the past "6 weeks to 6 months". I subsequently got kicked out of my house for 2 months and had to stay with family in New England. The only reason my fiance and I are back together now is because the ID doctors have said it was "absolute garbage" that I got it within 6 months, and they said it was likely many years.
Really there's tons of mixed emotions about that. Wondering why I never got tested before, and so on. I guess I just thought that since I felt pretty healthy that I was. Probably the hardest part of everything was that I had given it to my fiance. Things are going well now though. At least we both have someone to go through it with, although frankly, I don't know what I'd do without her. I wish I had known earlier about my HIV status, and yet if I had, I would have never met her in all likelihood. Anyway, she was doing much better than me with a CD still around 570, but she's going to start meds soon as we're thinking about having kids in the next year or two.
BTW, that's one of the things I have the most questions about. Have any of the women (or men for that matter) conceived and gone through pregnancy while positive? Apparently nowadays there's about a 1% chance the baby could have HIV, so that's pretty good. Just wondering if anyone would have any advice about that stuff. Also, just as a side note, she's not starting Atripla. It's some other one as Atripla can cause problems in the first few months of pregnancy. Anyway, Thanks again to everyone. You've all been really nice.
Assurbanipal, I just looked at your signature, and it struck a cord. Same idea for me. CD4 of 14, hospitalized with Pneumonia, very high viral load (although I don't recall the number offhand), and had to be on oxygen for 4 or 5 days. My oxygen level, just sitting and resting would hover around 70% (usually 96-98%) and I had to wear the oxygen mask day and night. Not for two months, but for a good month and a half, I couldn't really walk much at all. If I went from my living room to my bathroom I'd be gasping for air. It wasn't fun having all that, AND being kicked out of my place, and away from my fiance. It was a tough thing for sure. Bad enough I had missed Thanksgiving from being hospitalized, then the day after Thanksgiving I found out I was positive. Kicked out for Christmas and New Years, and lost my job in the process as I had to move to another state. It's hard not to have an anger problem when you want to choke the asshole doctors that told your fiance that stuff. Anyway, I'm rambling.
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There have been some great threads on the forums about poz people having negative babies. If you use the search box (look to the left and down) you can find them.
You may want to encourage your fiancee to join the woman's forum here for support as well.
And, for all those questions, have you found the lessons on the site? They are really well organized and helpful -- while we all want to help sometimes our responses can ...wander.
The lessons can be accessed through the treatment tab -- or just click here.
http://www.aidsmeds.com/articles/Introduction_4702.shtml
Best
A
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Taking the meds are a non-issue. Frankly, I was so freaked in general that I couldn't wait to start the meds. lol. I don't think the not sleeping thing is from the Atripla as I've had trouble sleeping for awhile now, realistically a year and a half to two years before I was diagnosed. Generally I sleep 4-5 hours a night, and it's not very good sleep at all. I've been told I have sleep apnea, and will be going to a sleep study before too long.
Pre-diagnosis I was having a lot of issues with sleep. I would be exhausted and sleeping constantly during the day but it was not restful in any sense of the word. At night I could only sleep for 3-4 hour periods and then around 5 or 6am I would wake up until about 9 or 10 when I could finally drift off again. All in all my sleep was very erratic. After about a month or two on Atripla my sleep began to normalize again. I'm almost certain I've talked about this in my oldest posts on these forums. It was very odd and I couldn't really put my finger on why but it did seem like the HIV itself was affecting my sleep in particular.
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yea i was having sleep issues pre dx and meds too.
thought i had sleep apena. so tired all the time. especially when i got up, and then when i d get home after wrok/gym i would just pass out sittting up.
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Let's make it a third. My sleep problems were pre dx as well and then were exasperated by the meds. We went through 4 or 5 different scripts before we found something that knocked me on my ass for sleep, problem was it also kept me knocked out most of the next day.
I am now back to taking one Target sleep gel a night (50mg) and it does the trick most nights. Sometimes I just cant sleep when I wand to.
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"Was also kicked out of the house for the next couple months because the doctors at the hospital told my fiance that I got HIV in the last 6 months. (Impossible I know) Actually wondering if I should attempt to sue them?"
I didn't read anyone addressing this question and hesitated to respond because I am new to the forums. Despite the topic at hand being their disclosure to your fiance that you had HIV, unless the two of you have some form of medical proxy established (minimal requirement is her being your emergency contact on your medical insurance), they should not divulge ANY medical information to her without your consent.
Depending on local law, this is a gross violation of medical ethics and could very well open them up to a lawsuit. Legally, your fiance has no right to be included on medical diagnosis or decisions as does, say, your employer. Depending on local or regional law (not sure if you're in the United States), you should contact a lawyer if you wish to pursue punitive damages - most often settled out of court through reaching a collective settlement. Unless you have strong evidence, you may end up paying a gross amount in court costs.
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Creighton, this forum is off limits to anyone who is not HIV positive. The only Forum you should be writing in at this point is AM I INFECTED. Please follow our rule.
Hopefully you are going to test negative. Thanks for your cooperation and good luck with your test.
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Damn, you guys are like the Gustapo about where to post huh? Kinda seems petty to me.
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Damn, you guys are like the Gustapo about where to post huh? Kinda seems petty to me.
Regardless of how it seems to you those are the rules here. There are reasons behind them which you are not aware of. Also, if you're curious it's the Gestapo.
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Jager,
1) You haven't gotten consistent answers about your date of infection. It may be impossible to date it. Or it may be possible. It may be a new infection. Or several years old. As Ann explained, it is possible that it is new.
2) Are you together again with your fiance? If so, why this talk about suing, etc. That certainly won't help anything.
3) If you are together again, you also considered the possibility your partner infected you? I hope so.
4) If you are together, its a fairly wise and mature spirit because it means you are both willing to take life as it comes and deal with issues together. You have to drop this obsession of who infected who and when and just both move forward. Really there are enough things to deal with being HIV+ - dont add negative questions about blame and shame, nor legal pursuits, they aren't the way forward to positive experience being HIV+. Most members with any experience in this forum will agree with that advice, as a basic.
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It's not a new infection. I understand why one might think that. My CD4 was 25, her's is currently 570, I'm on SSI, and she isn't.
1. How is it that I "you haven't gotten consistent answers about your date of infection". Seems like many of the people here would rather assume things though.
2. The thought about suing is because although I'm with my fiance now, I also lost my job, had to withdraw from college classes, and got kicked out of my house for 2 months because the doctors lied.
3. I have considered it, and it's not really a possibility, just with the numbers, and everything that's happened. I'm not naive, but I did this. It's my fault that the two of us are infected, not hers, so don't assume that it would be her.
4. I never asked about who infected who and when. That was something the people here assumed. I simply asked if I should attempt legal action, because the doctors were in my opinion Negligent at best. Not to mention completely out of line in telling anyone a timeframe when it's a thing that's literally impossible to gauge. They shouldn't be throwing numbers out in the first place.
That was my whole point is that I want to move forward, because it stresses me out, and at the same time, I feel that hospital should be punished. What they did was fucked up. They essentially told my fiance that I cheated on her and got HIV. It's more that I feel that they should be punished than me actually caring about retribution. At this point It's just the way they have handled things. It's been extremely poor. Finding out you have HIV/AIDS is never an easy thing, but they made things exponentially worse. Much worse than they should have, and much more than it should have been.
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Ah OK.
Well, discuss with a lawyer if you have good case to go against the hospital, why not.
I am sure it was quite a messy situation when you were so sick in the hospital. Maybe there was a point at which there was confusion by the hospital staff about who needed to know what. If they had no right to disclose information to your fiance, but did it because you were out of it and there was no family present - or etc etc etc. I guess you'll have to prove the complete negligence.
Also, it is not clear from your posts that the doctors "lied" - though maybe they did. Maybe you wiill have to prove this or maybe not. Maybe the case rests solely on who has the right to certain information.
It is also possible that the information was delivered to your fiance in a certain way and she took it and invented a story. She was extremely mad if she threw you out, etc. etc.
Anyway, it was your fiance who reacted to the information and threw you out. Not the hospital.
Then she turned up seropositive herself.
Just wonder when you got reconciled - after she turned up positive as well, or before?
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Damn, you guys are like the Gustapo about where to post huh? Kinda seems petty to me.
Jager, if you knew how pesky the people from the Am I Infected forum can be when let loose in the forums meant for hiv positive people only, you'd be thanking us for being strict about our rule as to where they can and cannot post. If we let them, they'd be in here constantly asking what symptoms you had when you were newly infected. As you know first hand yourself, symptoms - and importantly, the lack of symptoms - mean nothing when it comes to diagnosing hiv. Have a read of the Am I Infected forum and decide for yourself if you'd want that level of paranoia in the rest of the forums. :)
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I am sure it was quite a messy situation when you were so sick in the hospital. Maybe there was a point at which there was confusion by the hospital staff about who needed to know what. If they had no right to disclose information to your fiance, but did it because you were out of it and there was no family present - or etc etc etc. I guess you'll have to prove the complete negligence.
Also, it is not clear from your posts that the doctors "lied" - though maybe they did. Maybe you Will have to prove this or maybe not. Maybe the case rests solely on who has the right to certain information.
It is also possible that the information was delivered to your fiance in a certain way and she took it and invented a story. She was extremely mad if she threw you out, etc. etc.
Anyway, it was your fiance who reacted to the information and threw you out. Not the hospital.
Then she turned up seropositive herself.
Just wonder when you got reconciled - after she turned up positive as well, or before?
First, I was never "out of it" at the hospital. The second I found out I was positive, I called her (my fiance) and was hysterical, she rushed to the hospital to see me. When she got to my floor the two doctors met her (and her mother) and wouldn't let them go into my room, and proceeded to tell them that it had been 6 months.
Next, I know what was said, because when those two same doctors came to tell me that I was positive they said it was "within 6 weeks to 6 months". When I informed them that wasn't possible, and that it must have been from many years ago, they proceeded to tell my fiance (who was allowed to hear any and all of my diagnosis'), and her mother (who was not) that in their opinion it was "6 weeks to 6 months".
I didn't get thrown out because I had HIV, and had given it to her, I was thrown out because they said it was "6 weeks to 6 months", and when you've been in a relationship with someone for 2 years and the doctors essentially say that you've been fucking around and got HIV in the last 6 months (and that was their high estimate) that's a big problem. So yes she threw me out, but I can't really blame her from the "facts" the doctors had told her.
As far as the reconciliation, that was after she was positive. The day I found out I was positive she went and got tested. So within a week we knew her results as well. After repeatedly telling my fiance that it didn't happen within 6 months she agreed to go with me to my first HIV appointment. My CD4 in the hospital when first diagnosed was 14, then before my first appointment (about 2 months later because of all the confusion and moving 400 miles and subsequently having no health care) They had blood drawn again just to see where it was. This time it was at 25. She came with me to my appointment, where the doctor scoffed in disbelief saying first that "there's no possible way you could give a time frame anyway" and second that it was "impossible that it was within the past 6 months. It was likely many many years" then gave an estimate of anywhere from 5 to 10 years. Still dramatically different from 6 weeks to 6 months.
My fiance was very upset, and we were both floored by finding out we were positive, however I wasn't kicked out for having HIV, I was kicked out because of assumed infidelity because of what the doctors said.
All that being said, Ultimately it was my decisions that led to all of this in not being safe enough, however the doctors made it infinitely worse by saying what they did. You can say they didn't "lie", but even if they said it unintentionally, and meant that 6 months was a low range, they still made things much much worse.
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Jager, if you knew how pesky the people from the Am I Infected forum can be when let loose in the forums meant for hiv positive people only, you'd be thanking us for being strict about our rule as to where they can and cannot post. If we let them, they'd be in here constantly asking what symptoms you had when you were newly infected. As you know first hand yourself, symptoms - and importantly, the lack of symptoms - mean nothing when it comes to diagnosing hiv. Have a read of the Am I Infected forum and decide for yourself if you'd want that level of paranoia in the rest of the forums. :)
Ann, I didn't mean to bitch at you or anything, was simply having a bad day. lol. Had a lot of those recently.
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Yep gotta agree with you, those docs were jerks. Well i guess if you can sue them and win, why not? I'm glad it got sorted with your GF. Nobody wins in breakups based on misinformation.
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yea i was having sleep issues pre dx and meds too.
thought i had sleep apena. so tired all the time. especially when i got up, and then when i d get home after work/gym i would just pass out sitting up.
Seems to me sleep issues are not necessarily a result of the meds but some mental/psycho issue. I'm on Atripla and sleep like dead when I do. But lately I have been having some serious personal stuff to worry about and can hardly sleep. The other night I thought it was too much and decided to go to the local pub for a couple of beers just to while the hours. On my way home, i was stopped by the cops and done for drink driving. Now I'm in deeper trouble than i was before, but, well.... I like to look at it as something funny happened!!