Support advice needed

[deadmessengers]

First of all, I think it's great that this group has been organized. A responsible head-on policy against HIV/AIDS has long been one of the great strengths of our party, and I'm glad to see this group created as an extension of that policy.

The creation of this group is also somewhat timely for me. Yesterday, I found out that an old friend of mine is living with AIDS, which until recently had gone undiagnosed and untreated. He's now on antiviral meds, but I'm told that by the time he was admitted to a hospital recently with pneumonia and kidney failure, his CD4 count was down to 22 - forgive me for not knowing too much about this, but I understand that's pretty far gone.

My wife and I want to be as supportive as possible of our friend while he's dealing with this, and I had a few questions.

I know that as long as he's on meds, HIV/AIDS is a chronic, treatable condition. But, is it possible to "come back" from a CD4 of 22? From the little bit of research I've been able to do I know that normal is somewhere around 800-1000 - can he ever get a "normal" immune system back at this point?

I haven't spoken to my friend since I found out about this (from an entry on his blog) yesterday. For when I do speak to him, probably later this week - what is the one thing you wished someone had said to you when you found out you were HIV positive? I don't want to regurgitate the same old "HIV isn't a death sentence anymore" stuff that I'm sure he's hearing from a lot of people, but I do want to reassure him that my wife and I are there for him, and that we still love him no matter what. Basically, I'm trying to be as supportive as humanly possible, without crossing the line into being patronizing. This is something that I'm worried about for him, because of his fundie family. They have always been hostile to his sexual orientation, and I'm afraid that they may be laying the fundie on him pretty heavily right now.

Any advice you have for me (or advice for my friend that I can pass on) would be greatly appreciated. Thanks!

[richabk]

1. There is no magic wand...

My best friend is HIV+. He is also the first person I ever met (that I know of) that is. And he, too, is alienated from his fundie family. During the course of us becoming close me dealing with his illness was a very give-and-take time. Sometimes I'd ask how he was and I get my head bitten off...because it was a constant reminder of his illness. But on the flip side you can't ignore it either. I've also treated him like there wasn't anything wrong...and he's had to reign me in when he couldn't physically do something.

My best advice is to remind him that you care for him and you'll be there for him -- and then back up those words with action. Don't push. Let him find his balance. Listen.

[nealmhughes]

3. Fantastic advice!

Nobody living with HIV needs to be reminded...

My best advice is to treat him like you did before re: party invitations, invitations to movies, dinner, etc.

But I'm pretty sure he doesn't want to be a project!

He might be amazed at blood overcoming prejucice, too...

A long talk with a "liberal", i.e., Episcopal, Methodist, ECLA, etc. minister with the family might be a good idea, too if the family has religious reservations about their treatment of him.

[nealmhughes]

2. As soon as he goes on HAART, hopefully, and probably, his CD4 will slowly increase.

His viral load will drop exponentially, however, and in just a few months be at a very, very low level (given normal response to HAART). A lot of psychological symptoms, if he had any will probably lessen due to the decrease in the viral load. However, there may be some permanant damage, but with therapy, he should be able to recover most of his cognitive skills.

Here is my log from January 05 to May 06 using Combivir and Sustiva:

VL CD4 Date
150K 85 1-25-05
1500 115 3/4
125 186 4/8
<50 239 7/8
<50 197 11/19
<50 308 2-15-06
<50 286 5/22

Now this is "anecdotal," and not scientific, but I have gained over 40 lbs since January 05! I had a very bad brain infection with delusions, stumbling gait and memory lapse back then. It took me from January 05 until May of 05 to get the point to walk in the city or go out to do simple chores. By the middle of May I was well enough to go all the way to St. Louis for a Dodgers game from Nashville (I didn't drive, of course, as my doctors are afraid for me to due to a stroke I also had which is another side effect of high HIV infection counts).

Luckily, I had my family and fantastic medical staff upon whom to rely. The various HIV service orgs are fantastic! They offer rental asst. for those who can't work, dental and optical care in addition to helping to handle medical appts., SS claims, Medicare, insurance and counseling and peer interaction.

What your friend needs is to know now what he had that was making him ill, and to occupy his time to reduce stress and to let his body start to heal. Hopefully, he has good friends and allies at work who are able to not shuttle him aside, but to try to make him feel like part of the group he always was. Nothing has changed, except he can't give blood and needs to take his meds on schedule.

Feel free to send me an email if you like.
Pax,

Neal Hughes, Latter Day Leper

[pinto]

4. I think anything you say honestly from your heart, as in your post,

would be appreciated for what it is - a gesture of support. He may very well let you know what happens next. I wish him the best on his antiviral therapy.