Full Blown Aids

[Big V]

I will say a prayer for Stafford. So sorry you have had so many terrible things happen in your family. I am sure your brother would be happy to hear from you.

 

[Christine]

The daughter of one of my co-workers just passed away from AIDS. She was 38 years old.

He didn't really talk a lot about it; however, about 2 weeks prior to her death he told everyone that he would be in and out of the office because he daughter was in the terminal stages, yet she was still living in her apartment.

Toward the end, she had pneumonia (still at home) and he had left work early to go pick up her antibiotics. She was taking a shower/bath and either slipped and fell or lost consciousness and fell. She hit her head in the tub and died.

They believe that she was just very weak and fell down. So, I would say that frailty and weakness are probably what you are going to see near the end.

Sorry for everything you've been through. Sometimes it is really just a tough world, isn't it?

 

[Felicia]

I have no advice on AIDS, but my heart goes out to you and your family. I know know what it is like feeling as if life has dealt you a bad hand. Stay strong.

 

[Keli]

I have a friend whose brother has had full blown aids for at least the last seven years. He seems to be doing pretty well and holding his own. He cannot work but he gets out and goes places, runs errands, visitis family/friends, has a full life.

I am very sorry for the death of your sister. That kind of tragedy is horrific in the extreem. I hope they catch her murder/s soon.

 

[s&k'smom]

I didn't even read the rest of the posts when I just wanted to send you my best and hope that somehow your situation gets better. May God Bless your sister's soul and I'm sure she is watching you from heaven. Take care and always come to the Dis if you need to vent.

 

[canwegosoon]

Saying a prayer for him, and you.

 

[olena]

Take comfort in your Faith......

Send your brother whatever love you can. The care package sounds like a great start. I have 3 family members with HIV. All of them contratced it in the 80's, and they're all still with us. I hope your brother can keep his liver in good shape to give the meds a fighting chance.

As for your sister, I'm truly sorry to hear about that. Trust in your Faith.

 

[Leota]

Hi MsDisney-
Sorry I am responding so late - I just got a PM to check out this thread.

I have been living with full blown AIDS for almost 10 years, HIV+ for approx. 17 years.
With the new meds, if you are lucky, you can live with AIDS for many, many years. The key is if you are lucky, if you take care of your body & take your meds 100% of the time, on time, according to the directions for maximum absorption. The last thing you want, if viral resistance, which happens if a persons metabolism is in a different range than the average tested (this is more common with women), missing meds, taking meds differently than labeled (ie. on a full stomach when empty is called for)

Sounds like your brother is on the right track by getting clean. Drugs & alcohol are hard on the body, interfere with the meds & make compliance even tougher than it already is. I pray that he stays clean & keeps up with his medical appointments & his meds & doesn't develope resistance.

If he does not have luck with the meds & his disease advances, it is still variable as to what rate he will deteriorate at. Some people live full, relatively healthy lives with little to no T-cells for years. Others, get sick with 200 T's - It's all based on the individual.

When/If he goes below 200 (which I'm assuming he is due to his AIDS diagnosis) He is in danger of several opportunistic infections, including PCP, which is one of the more common OI's. He will go on an antibiotic to ward off PCP & toxoplasmosis. He may be prone to yeast infections. This is an indicator for me, that all is not well internally. The other indicator for me is Oral Hairy Luekoplakia (sp?) white lines on the sides of my tongue. This is generally not anything which impacts my life, but it is a very clear indicator when my HIV is active & destroying my system.

Endstage AIDS is a very difficult roller-coaster. At that point, 50 or less T-Cells - the body is really at high risk. Eating becomes difficult & wasting sets in. The person may suffer from several OI's at once. Often, medical intervention buys time between infections before fatal complications develop. That's why I call it a roller coaster.

As a person living with AIDS, things that are the most important to me is compassion without pity, support, ability to have LIMITED times of self-pity/weakness (it's hard, I usually try to be strong for my family even when I'm scared witless - having a place to lean on someone else for a few minutes if so vital) I don't like it when people try to force me to eat - I do like when my family accomodates me when I find something I can eat.I hate it when people look at me differently. I don't mind answering questions about the disease, but don't like when people ask me how I got it, that's personal & if I felt like sharing it I would.

The Good News is, there are lots of great medicines out there & your brother could live a very long time. I expect to & I have highly resistant virus - but I still believe in the miracles of God & of medicine.
The bad news is, his life has radically changed - He will never be able to be who he was before. Some of these changes are for the best, some are harder, but surmountable. With support, spirituality & a good medical team he can still have a great life (I know I do!)
I will light a candle for your brother & all your family. I pray that he will have the Full, Joyful Life that I have, even with this diagnosis. I pray that this brings him the kind of gifts I got & I pray that you all are pulled together by his illness & that together you will all face this illness & overcome.

 

[Trish Bessette]

Wow, this post has left me speechless. I do not know anyone who has HIV but I think reaching out to your brother with the care package is wonderful.

I admire your strength and wisdom. You have gone through way too much pain.

Trust in your faith. Keep us updated on your brother.

Prayers to you.