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partner recently disgnosed with ADC

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md:
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so bad that I told his doctor that I just couldn't manage to look after him at home any more (by that time he was very withdrawn and starting to suffer from incontinence) and he suggested trying to get him hospitalized in the psychiatric unit of the local hospital.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.



kentb:
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

Lis:
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

md:
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

IzPoz:
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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