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Author Topic: The more I read about cd4 counts the less important it seems (i think)  (Read 2265 times)

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Offline Maestro

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I might be completly wrong on this, but when I first starting caring for my Uncle and his cd4 count was at like 100 I was freaking out.  Then it came back to 140 and I was still freaking out.  His VL at the current time is like 600, but he says it is usually undetectable.

It seems to me that with attention to detail, almost any infection can be treated, it is just a matter of getting help soon enough.  I was previously under the impression that these OI's would get him and be resistant to antibiotics and such.  However, he has had like 3 infections and while they were slow to go away, they did all clear up.

I really am amazed at this.  When I first came to this website I thought it would be full of stories with people fighting all these idifferent infections.  Almost like a "Tuesdays With Morrie" for HIV.  I am learning, however, that this forum is full of being who are doing just fine!  Is this a representative sample of people living with HIV that have access to meds? 

Sometimes my questions may seem obvious, but this all helps.

Thanks,
M

Offline bear60

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #1 on: September 11, 2006, 10:00:29 AM »
" Is this a representative sample of people living with HIV that have access to meds?  "...quote
Yes, I am sure it is. But you do understand that there is a strong sense of loss...loss of the life we knew or the good health we had etc. Living With HIV is not all a bed of roses. Many people have had to quit work because they are so fatigued they can no longer meet the day to day reqirements of a workplace. Do they look good...probably so....do they look "normal" probably so,......... do they enjoy food and movies and travel, probably so.
Poz Bear Type in Philadelphia

Offline Maestro

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #2 on: September 11, 2006, 10:27:45 AM »
Bear,

Thanks for the quick reply.  That is exactly the kind of input I am looking for.  As I care for my uncle, I learn something new every day.  I do notice a lot of fatigue in him. I also notice a lot of confusion with him.  However, these seems to be 'normal' for him now.  While the HIV has no doubt lowered his quality of life, it does not seem to be lowering it any further.  When he first arrived here with us I was thinking, wow, he is messed up.  And each day seemed worse but it really was just me noticing new things he has been dealing with for years.

So basically, it appears he is at a "baseline" but not getting any worse.  I have tried as hard as I can to get him to want to go out, exercise, eat healthy, and generally take care of himself.  He refuses.  He appears to be under the impression that as long as he is taking his meds,  he has nothing to worry about.  In the beginning, I was thinking he was nuts for having this outlook.  But like I said, the more I read on here the less nuts he seems. 

M

Offline Matty the Damned

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #3 on: September 11, 2006, 10:28:14 AM »
M,

A malfunctioning immune system is more than just an issue of not being able to defend oneself against infection. There are the multitude of cancers we're prone to. Not to mention the auto-immune disorders.

MtD

Offline Maestro

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #4 on: September 11, 2006, 10:42:33 AM »
M,

A malfunctioning immune system is more than just an issue of not being able to defend oneself against infection. There are the multitude of cancers we're prone to. Not to mention the auto-immune disorders.

MtD

Matty,

Thanks for the response.  I get this, but when I took him to his infectious disease doctor, the dr. said Hey, he can live to be 90 on these meds. I almost wished he hadn't said that for my Uncles sake.  I wish he would have said the meds + exercise + healthy diet will help you live to be 90 (unless of course a bus gets you crossing the street).  So it seemed to me that the cancers and other problems are held in check by the meds? At least in some people?

Thanks
M

Offline Matty the Damned

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #5 on: September 11, 2006, 10:46:46 AM »
I guess it's that stuff about immune function differing from person to person. I've got friends who tootle about on fuck all CD4 cells with nary a problem. Still others (including myself) have counts above 200 and we get ill. I do think the medications are a big player in this equation.

Perhaps it underlines how little we still know about the human immune system.

My thoughts and best wishes to you and your Uncle.

Fondly,

MtD

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #6 on: September 11, 2006, 11:03:29 AM »
Hey M,

Minimalizing the effects of OI's through early and appropriate treatment is one thing that has improved for possies.

Fact is, your uncle has AIDS. He has a pretty severely impacted immune system. You mention he does seem fatigued. That goes with the territory.

The mental fog, or confusion, also goes hand-in-hand with HIV.

As Matty said, there are a host of cancers and auto-immune disorders that go along with HIV, especially, those who have lived with the virus for an extended period of time.

The HIV meds do one thing - attack the virus and stop or reduce is reproduction. Everything else is up to our bodies and additional medications used to fight specific OIs.

We have people here who have survived PML. Trust me, that is an accomplishment that still amazes me.

Keeping the virus at bay is one thing, fighting off other things that attack us is another. The HIV meds don't do anything against the OI's. That is why people take Bactrim when their CD4s are below 200 even if they are taking ARVs.

The ARVs fight the virus, Bactrim helps protect against PCP. The lower the CD4, the more drugs must be added to protect the person from additional diseases such as MAC, CMV, etc.

There also is the matter of the toxicity of the medications. While some of the newer drugs seem to have fewer short-term side effects, nobody really knows what the long-term effects will be.

I know you have already been through a lot with your uncle and want the best for him.

It is very possible he may go on indefinitely, doing relatively well as long as he sticks to his meds. I hope he does.

But in the long-term, there are still many unknowns.

You are right about your uncle's eating more healthily and getting some exercise, but getting him to do it may be a battle.

The person has to want to do these things. For some of us, it reaches a point of overload. Between taking meds, taking meds to offset the side effects of the meds, adjusting your diet to reduce fats, etc., trying to exercise to keep fit, taking the needed food precautions for those with severely impacted immune systems, etc., after a while, a guy just says, "Enough. I can't do any more."

There are days I feel like this Those are the days I eat bacon. Other days, I am faithful to my tofu breakfasts.

This, of course, doesn't even touch on the issues of aging and AIDS. Sometimes its hard to discern between what is happening because of the virus and things that show up because we are simply approaching our senior years.

The bottom line is your uncle has to assume some responsibility here. He must want to improve his lifestyle, etc. If he doesn't, well, all the nagging and cajoling in the world won't make him do it.

Trust me, I know, I am still smoking.
HUGS,

Mark
« Last Edit: September 11, 2006, 11:14:02 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Maestro

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #7 on: September 11, 2006, 11:57:57 AM »
Aztecan,

Wow..Lots of great info there.  Really clearing this up for me.  I know it is up to my Uncle, but he is SO reliant on me to do everything else for him, that it just seems natural for me to worry about his health as well.  However, thats the one area he wont let me in.  I know he lies to me about the multitude of pain killers he is taking.  But in the end, what can I do?  We do our best to help him. 

Now if the virus has already damaged the Immune System, then stopping the virus does or does not appear to rehab the immune system?

One last question for you.  Would my Uncle definently be classified as someone with AIDS and not just HIV +?  He had PCP (7 yrs ago), bacterial pneumonia 2 months ago, and cd4's around 140.  Does that = clinical AIDS?  If it does, is there a difference in what I can expect between someone with a low CD4 count who is only HIV + as opposed to his 'AIDS' status?  (I realize I am asking you to look in a crystal ball, but just an educated guess...er..hypothesis as I tell my 9th grade Bio students!)

Thanks in advance as always,
M

Offline wellington

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #8 on: September 11, 2006, 12:22:08 PM »
Hmm. What else can you do when someone lies to you? Call them on it. "Hey, uncle. What are all these pain medications for? What kind of effect do they have on you? When do you find you need to take them most often?" If you gotta start somewhere to open him up, best you let him know that you're not dumb enough that he can lie to you.

According to the CDC (Center for Disease Control) when the CD4 count drops below about the 200 mark, HIV-positive folks are generally referred to as having AIDS. I guess that entitles me to say I had AIDS but now I'm only HIV-positive ;) Above that magic 200 number is best to avoid many of the OIs that plague us pozzies. The further, the better, but the number itself can flucuate quite significantly. You might see people reference a CD4 number and also a % which is the relationship of CD4 to CD8.

There is no shortage of things to know about this disease. Medications aside, there's also the mental aspect. Being fatigued and unable to do the things one wants to do can take it's own toll.

Offline Maestro

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #9 on: September 11, 2006, 04:48:27 PM »
Wellington,

So if you dip below 200, you ahve "aids", and rebound above, then you don't.  Interesting.  I guess my Uncle does have AIDS then.  Funny because my view of someone with AIDS was much different then the mental picture I had of HIV+.  I guess today it is possible to have AIDS and still be pretty healthy.

I'm worried with his low t-cells.  He is in therapy 3 times a week.  Making some good progress.  Getting back on his feet...almost able to walk without the walker...But I feel like with the low t-cells, something is just waiting to pop up and be a major setback. 

So all in all I am very puzzled.  Don't know if you read the entire story, but when he was comatose in Austria I was sure he wasn't coming to the states alive.  Now I don't know if he is in the beginning of a miraculous recovery, or the beginning of a long, drawn out end. 

M

Offline Matty the Damned

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #10 on: September 11, 2006, 05:09:37 PM »
An interesting aside, in Australia once you've been classified with AIDS (according to the WHO definitions) you have AIDS for the rest of your life.

MtD

Offline wellington

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #11 on: September 11, 2006, 09:23:09 PM »
It's possible that that is the case here, too, Matty. I just recall something from the CDC site about that magic 200 number. I would make sense to keep the label to avoid people thinking that AIDS could be cured, which currently it cannot. it's just a silly label meant for communicating and doesn't really sum up to all it's meant to be - at least not in a favourable way.

Offline Matty the Damned

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #12 on: September 11, 2006, 09:25:43 PM »
I remember something about some US states reclassifying people whose CD4 counts went above 200 or 250 as no longer having AIDS and thus no longer being eligible for free or subsidised HAART.

Most compassionate.

MtD
(Who was declared to have AIDS in 2003)

Offline wellington

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Re: The more I read about cd4 counts the less important it seems (i think)
« Reply #13 on: September 11, 2006, 09:28:28 PM »
Here's the official word from the CDC, which agrees with Matty's take.

http://www.aids-ed.org/aetc/aetc?page=cm-105_disease#t-1

Classification is based on the lowest point achieved. I still feel better knowing that my present state isn;t so dire, however :)

 


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