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Author Topic: My brotheris very sick, help me understand the tests plz!  (Read 4600 times)

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Offline peaches1647

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My brotheris very sick, help me understand the tests plz!
« on: February 24, 2009, 06:42:04 PM »
Hi, this is the first site I have found that has been very helpful to me in alot of ways. Although I still dont understand a few things and wonder just how sick my brother is. We live in two different states, we talk daily several times. Over Thanksgiving he was put into the hospital because he had TB and he was there till well after Jan 1. Because of some of the TB meds he cannot take his HIV meds...His cd4 was 32 last week and his viral load was almost 2000. I know his cd4 is extremely low, but am not sure what the viral load means. Recently he has had a couple of tumors show up on his neck. Its hard for him to sleep, talk or eat at times with how badly it hurts. He has NO spleen he lost that due to an accident yrs ago. I know its harder for him to fight off infection. He was diagnosed with HIV about 18 years ago and up until the last 3 years was NOT taking any of the meds. He is down to 115 pounds, he calls me with his meds he is taking and has me look them up for him. So i know what hes taking. He has a nurse coming to the house daily now to be sure he takes his TB meds. They also wanted him on hospice and I am not sure if they come in yet or not. I am scared, I am the only one he talks to about it. I am the only one in our family who has even seen him in the last 15 yrs. He and I are only 2 yrs apart and very close. I dont know how much time he has left, and I need help so I can understand better...plz any help will do..plz

Offline Assurbanipal

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #1 on: February 24, 2009, 09:23:52 PM »
Hello Peaches

I'm sorry to hear that your brother is ill.  I hope you can help him access treatment.

You mention his CD4 count at 32.  That is a very low level.  It means that he is at risk of serious opportunistic diseases.  However many of us have recovered from similar levels ; my own low point was a CD4 count of 40.  His viral load of 2000 is not particularly high, but that is probably less relevant than his CD4 count over the short term.

I wish I could help you more.  Have you seen the lessons on this site?  They may provide further assistance.
http://www.aidsmeds.com/articles/Introduction_4702.shtml  Also if you have other questions please post them -- there are a number of more knowledgeable people on this site and we admire your being there for your brother.

Sincerely

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #2 on: February 24, 2009, 09:44:41 PM »
Thank you for responding, yes I have read  the lessons and just about every page here since I stumbled upon the site. He is getting help now and has been taking his meds pretty regularly. But in Sept he decided to take off for Texas to help the flood victims which I thought was wonderful. He had told me he had a 3 month supply, when actually he did not. He had one months worth and had gotten so sick while in Texas, finally in Nov he went back to Florida. He was in Florida less then two days when he was admitted into the hospital right away. Tested positive for TB, he was in till after Jan 1. They have now sent him for MRI's And Ct scans. I know he is taking his meds now souly because of the nurse who goes to make sure of it. He is not on any HIV meds at the moment because of the TB . He is currently taking a huge cocktail mix of TB meds. They said they will be putting him on the ATRIPULA(pardon my spelling if its wrong)...They also think he may have cancer in the tumors on his neck so they did a biopsy, we will know at a later point if it is or not. I am so worried, I know his cd4 is very low. I still have no idea about the viral load number, even though I have read up on it. I am sorry if I seem so clueless. It just breaks my heart daily when he is so tired and then he sent me a recent picture. I saw my brother a little over a year ago and he was about 180 pounds, he is no where near that anymore. He is all skin and bones and his face looks very sunk in. I support him every way I possibly can. I have even made it so I work nites because he usually calls me all throughout the day, and we talk ALOT during the day. Thank you again

Offline Assurbanipal

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #3 on: February 24, 2009, 10:04:39 PM »
Hello Peaches

If your brother has been on HIV medications before you should ask if they have tested him for resistance.  ATRIPLA is a very popular HIV medicine for people new to HIV medications and it generally works very well, but when people start and stop medication they can become resistant to them.  One of the medications in ATRIPLA is particularly susceptible to this, so it is important they make sure it will still work before they put him on it.

As far as the viral load number, it is used to track whether the HIV is active.  The goal of treatment these days is for a viral load of under 48 copies, also known as "undetectable.  That level basically means that the HIV is not actively infecting his Tcells.  2000 is not undetectable, but it is not particularly high (mine started at over 1 million). 

I hear your love for your brother and I'm sure he feels it in your phone calls.

Best wishes
Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #4 on: February 24, 2009, 10:33:21 PM »
Thanks again, he was on the ATRIPLA before he went to Texas, he hasnt been on it since I would say late OCT....he has a script now for it, but as I said hes on TB meds at the moment and as soon as they switch them around he will start it again. Right now he is working on getting rid of the TB and recovering. I almost lost him this time, sorry this is so hard for me. When I am on the phone with him I stay very upbeat and happy and we talk about everything and anything, I even send him goofy packages. He asked me if I could send him a HUGE hershey kiss so I said sure, but I couldnt find one. So I sent him a BIG set of solid chocolate lips wrapped in red foil and a bih ole bag of lil hershey kisses with a note. "Heres a some lips for all those kisses". He called me laughing. Laughing helps him and I both. Even though we have our serious times, we have a ton more silly times. They told him if he gets the slightest cold or flu he wouldnt survive it right now, we're both scared. I am sorry I didnt mean to go on like that. Thanks again.

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #5 on: February 24, 2009, 10:41:43 PM »
Oh I forgot something, you had mentioned oppurtunistic infections or diseases. In the last yr he had experience with approx half of the list. and has alot of them besides the TB going on at the moment. His TB test on Mon started coming back NEG for the TB, and just waiting on a few more test and maybe he will be cleared of it. I keep a journal, so everytime he or the nurses or doctors tell me he has something else I write it down and then read up on it so I know what they are talking about. Its in just the last year he has started telling me any numbers of anything. TY

Offline Simba

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #6 on: February 25, 2009, 03:02:54 AM »
Hello Peaches

I really feel for you. Your brother is very lucky to have someone who cares for him like you do. I hope he pulls through this current episode.

Best of luck for both of you.

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #7 on: February 25, 2009, 10:50:49 AM »
Thank you Simba!

I feel as though I am the lucky one to have a brother like him, I tried to call him this morning and it just kept going to voicemail. So of course I worried, and then found out that he is at the hospital now for test and they dont know if they are keeping him yet or not. I wish I lived closer, and I wish financially I could go be with him. So for now I sit and wait to hear whats going on.

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #8 on: February 26, 2009, 02:15:09 PM »
Well after waiting most of the night they did admit my brother. He has these very large lumps on his neck now which are making it hard for him to talk and swallow. Right now they are running tests to see if any of them can be removed, one is sitting directly on his jugular vein. I am going to try and find a way to go see him as soon as I can. Anyway thats whats happening now. Thanks for listening, this site and a few of the members have been so helpful.

Offline 072508

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #9 on: February 26, 2009, 05:56:57 PM »
Peaches,

You're amazing! You both are lucky to have each other. I have yet to tell my family about my diagnosis. I can only hope when the time comes, they will be as supportive as you are to your brother! I hope your brother pulls through without a hitch!!!! :) :) :)

Jon

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #10 on: February 26, 2009, 08:28:21 PM »
Thank you Jon! I hope your family will support you too. My mom still isnt as supportive as I would hope she would be , and alot of times I have to ask her to stop and think about what she is saying. Sometimes I do not agree with how she approaches him and I feel I need to stick up for him. Once she realizes what shes doing at the time shes very apologetic, but sometimes that isnt enough for my brother and I fully understand why.  He and I are closer now then we ever have been. At one point it had to suck to be my mom, my brother and I were in the hospital at the same time and shes in PA, I am in Indiana and my brother is in Florida. I had a heart attack Jan 1 and he was in the hospital for the TB. During this time even though it was serious for both of us, we joked about who would get their meds first, or who got their meal first. Kind of like a race!! I am doing a little better now but I am awaiting surgery. Even though I know my focus should be on my health and for the most part it is, but I always feel guilty if I have to miss one of his calls or text messages because I had to have a test done.
 With all that said, I have seen other messages where ppl tell someone to talk to whoever your closest to in your family. Its a start.....This has become the main place I read daily....so if you would ever like to talk, I am here.

Tina

Offline rpm1437gcw

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #11 on: February 27, 2009, 10:14:15 PM »
 :'( :-* hey i am very sorry to hear about your brother.  I am new to this site however i am not new to this disease.  I was diagnosed 12 years ago this coming august.  as others have said the viral is pretty good.  you really want him to be undetectable.  As a doc told be the viral load is the amount of virus in a certain amount of blood.  if he did not need meds until three years ago then he has done great.  I am a frim believer that we can come back.   to give you hope i will keep him in my prayers.  God does watch over ALL his children.  You must not give up on him he counts on you it sounds like.  if you need positive thoughts see what others say about their surviving all these years check out my "poz influence on life..."  with my prayers on Gods love to you and your brother.
beauty is in all of us we need to see beyond the physicla to the soul.

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #12 on: February 28, 2009, 07:00:41 PM »
I am sorry, it isnt that he didnt need the meds till 3 years ago, its that he finally started taking them without fail. I just found out today his viral load is seriously high. I spoke to the dr earlier because he is in the hospital again, his viral load is well over 500,000 and his cd4 is now at 18. He was admitted due to the lumps on his neck but late last night started having severe stomach pain, vomiting and severe runs with a major fever. I spoke with my brother just a few minutes ago and he sounds horrible and trust me I am not going anywhere, I will continue to be there for him every second of the day, as I sit here writing this I am in tears. My heart breaks for him right now and all I want to do is be with him. Thank you for your reply and I know god is watching over him just as he is everyone else. This site has come to mean alot to me, its easier for me to find things out about him and his treatments when the dr's tell me what is going on. When before I kept going to tons of other web sites and never getting any real answers. So again thank you

Offline Andy Velez

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #13 on: March 01, 2009, 06:26:26 PM »
Fingers crossed for your brother, Peaches. I've known many times for people to be in dire circumstances and then make amazing recoveries. Hoping he's going to do just that.

All the best to you both.

Andy Velez

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #14 on: March 01, 2009, 09:36:39 PM »
Thank you Andy!! He is not doing very well, he tried to talk with me on the phone today twice and couldnt even get out any complete sentences. I am trying to keep my hopes up I really am, this is the worst he has ever been. His immune system has been stressed to the max these last few months and barely gets over one thing and then its another, and none of them mild. I sit and pray and pray and pray and since he is unable to talk to me I depend on his partner to call me and fill me in. Like I said i am trying to get there to be with him, but this economy is not making it easy at all. Recently my husband and I talked and we both agree'd if I go to be with him, that I am going to be staying a while Anyway thank you again.

Tina

Offline Inchlingblue

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #15 on: March 03, 2009, 07:03:22 PM »
The American Academy of HIV Medicine has a website AAHIVM.org in which you can search for HIV specialists by zip code. They are a respected organization and they require that members be certified with a certain level of knowledge and experience treating HIV/AIDS. Hang in there.
« Last Edit: March 03, 2009, 07:25:30 PM by Inchlingblue »

Offline peaches1647

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Re: My brotheris very sick, help me understand the tests plz!
« Reply #16 on: March 03, 2009, 07:06:20 PM »
Thank you! I am going to go look at it now

 


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