POZ Community Forums
Main Forums => Living With HIV => Topic started by: md on August 26, 2006, 03:28:12 pm
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Hi!! Hope this is the right forum to post this in ...
My partner tested positive at the beginning of June.
Unfortunately things were already very advanced by that time.
He was (probably correctly) diagnosed with depression about 2 years ago and when he started to complain about having problems concentrating and remembering things his doctor assumed that this was all related to the depression. Things got a lot worse at the start of this year, but his doctor was still convinced that this was all caused by depression or some other psychological problem. Finally things got so bad that I told his doctor that I just couldn't manage to look after him at home any more (by that time he was very withdrawn and starting to suffer from incontinence) and he suggested trying to get him hospitalized in the psychiatric unit of the local hospital. When I took him over there, they were wiiling to admit him but said that they wanted to get some physical tests done first. So, we took him over the the ER of the main hospital to have some tests done and a few hours later I am listening to a very helpful doctor explaining to me that, while she can't be absolutely certain until she gets all of the test results back, based on a CAT scan and all of his symptoms she is 99% sure that he has HIV and is suffering from advanced HIV associated encephalopathy.
... and she was exactly right.
He had HIV, his CD4 count was 38 (I forgot to ask what the viral load was) and he also had PCP.
(my best guess is that he was probably infected about 12 years ago)
He was started on HAART immediately (viread, emtriva, sustiva) and when he was discharged from hospital we found him a place in a nursing home (where he still is today).
His language skills are very poor - he can still answer simple yes/no questions (but not always accurately) and can sometimes manage a few more words, but that is about it. As far as I can tell he his completely unaware of his surroundings and the fact that he is in a nursing home. He still recognises me, but has no idea whether the last time he saw me was an hour or a day or a week ago.
The big problem that I am having is that there just doesn't seem to be very much information out there about AIDS Demetia Complex or the prognosis. Most of the stuff that I can find on the internet is pretty old and generally everything seems to come down to one or two studies or a few platitudes about how much the incidence of ADC has decreased since the advent of HAART (which really isn't much comfort).
Both the neurologist and the infectious diseases specialist who saw him seemed to think that there wasn't much hope of improvement. They suggested trying HAART for 6 months to see if it helped but pretty much told me not to expect anything.
Right now his quality of life is pretty minimal and, while we never explicitoy discussed it, I don't believe that he would want to have his life prolonged in this state. One of the questions that I am struggling with is how long we should go on trying and hoping for some improvement. To be honest, I think that the worst thing that could happen is that he gets only slightly better - just enough to understand the state that he is in.
I'm sure other people have had to deal with this - any thoughts would be most welcome.
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Dear MD, I unfortunately don't have any experience with this condition but I am sure someone will be on here that has dealt with this in the past. I just wanted to say welcome to the forum, and while I can't help with this particular situation I am sorry for what you are going through and I will keep you both in my thoughts.
Kent
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your partner is very lucky to have you... i find myself wrestling with CNS problems... and there really is no RIGHT way to deal... please try and see the 6 months through... as the CD4 improves..so might he... If at that time you and all the docs say it is going to get worse, and you know how your partner would have wanted to live and be remembered, then let him go in peace.. God bless you!!!
lisbeth
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Thanks for the support.
Yes, we will definitely see the whole 6 months through, and possibly longer.
I know that there really isn't much more that can be done now other than just wait and see what happens but sometimes I get impatient and frustrated because there are no easy answers.
Michael
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Michael,
You may have many times of frustration. Keep in mind this will be a tough journey for you. My heart goes out to you. Be there for your partner, I'm sure he knows you are there, and loves you for it.
I hope for a peaceful journey, and I will keep you both in my thoughts.
Be well, and don't forget to take care of yourself.
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New info on ADC is less common cos ADC is less common. The right treatment is HAART, plus other supportive treatments.
ADC is, at least in part, caused by white cells invading the CNS and brain because of the virus causing inflammation there. Reducing viral load will put the immune system into balance and perhaps in time there will be a significant recovery. The docs are right not to raise your hopes, but the undertone of "this is the beginning of the end" is somewhat premature methinks.
A good therapeutic target would be viral load under 50 + CD4 count of around 200 minimum. Neurological recovery can be slow, but is these days more likely and more assured. Neurological rehab + physio will at some point become useful interventions. Unless all is lost immunologically, I would give HAART a year at least before thinking about stopping.
Good luck
- matt
Now playing: Neil Diamond, Song Sung Blue
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Dear Michael,
Don't wanna give false hope, but I have seen some guys suffering from ADC really getting better on HAART, so I so much hope that your partner will benefit from it.
Praying for you.
Coen
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Hello Michael, it is Eldon. I am sorry to hear that your partner has been diagnosed with ADC. However, it is a good thing that he is in the best of care right now and they have placed him on HAART therapy. Be there for him through the thick and thin.
You both are in my thoughts and prayers that things will turn itself around for you.
Have the BEST Day.
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Hi Michael.
I can't say I had ADC. But I can tell you after being hospitalized with PCP for 2 months my entire thought process was severly compromised. During the initial release from the hospital I had no idea how to work a TV remote and the telephone just baffled me completely. I had to learn to walk again. And talk again. I saw some initial progress after 6 months but it will be 3 years now this Oct and I'm still got some sort of cognitive disfunction going on. Some people might think I'm back to "normal" but I know I'm just not as sharp as I used to be. Some people are kind and try to convince me it's just part of getting old (I'm 56 and don't consider myself old) but I know it's AIDS RELATED.
Help your partner work with crossword puzzles. Or other word games. PUt him to work in the garden. Ask him help you with dinner. Have him log on to here and read some of our postings. Aidsmeds has been know to have remarkable recuperative powers!
robert
(who has been taking it slow but steady...one word at a time. and he loves crosswords)
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Hi Michael,
Welcome to the forums. So sorry to hear about your partner.
I will keep you both in my prayers and sending you good thoughts.
Hang in there hon.
Hugs
Teresa