This Can Happen To ANYONE

[joanne]

My 1st post here and can I start by saying a huge 'thank you' for such an informative site.
8 days ago my mum told me she has tested HIV+, an hour from being diagnosed, I was the first person she told. Those of you have had the unfortunate experience of been given such shocking news regarding a loved one/friend will know exactly what we are going through, agony.
To anyone reading these forums who are naive or ignorant enough to think it could never happen to them-believe me-it can.
After over 30 years with the same partner from whom she seperated 5-6 years ago, my mum has had 2 relationships since, the first, through method of deduction, being the person she contracted from, (the Doctor has estimated she's had this 3-4 years) the second she met 2 years ago, she split from 7 months ago due to her ill health and needing to be near her family to care for her.
I am under no illusion that this virus can and does infect ANYONE, you may say as I have, that my mum has been particularly 'unlucky' compared to overall statistics that you are more likely to contract HIV+ if you are sexually promiscuous or share needles, but the point I want to get across is, my mum was neither of these, this can and does happen to anyone and if there is just one person who by reading this who I make think twice about the consequences of what risk they could be putting themselves in before having unprotected sex, then I just might have saved someone from the ordeal that my mum and her family are going through right now.
Thank you for reading, please be safe and aware, don't ever underestimate the risks.

[Peter Staley]

Joanne -- your mom is very lucky to have you by her side.  Please let her know that we are here for her if she has any questions.

Sincerely,

Peter Staley
Founder
AIDSmeds.com

[joanne]

Thank you Peter for your personal response, this is all so surreal to me right now, neither myself or my family know of anyone who has this infection, which makes it all the more difficult to comprehend.
I initially spoke to a Doctor at the hospital my mum was at, at the time of first being told. She has since been moved to an infections unit at another hospital. The Doctor at the first hospital informed me that this is only the second case she has seen of its kind, i.e. HIV+ being undetected for so long, as because of my mums age, 64, it was the last test they did as all other tests (cancer etc.) came back negative. She is guessing that my mum contracted this some 3-4 years ago, how does she know this? Reading up on this infection, most sites state that in most cases, symptoms dont appear for some 10-12 years.
Since mum being moved to another hospital, the only information I've had, via my mum, is that shes being given Septrin, an anti-bacterial drug.
Two days ago she said her TCell count is 200. Since yesterday they have started her on two different drugs, I don't know what these are yet.
I am waiting for an appointment to see the Consultant looking after things, to hopefully learn what the long term outlook is and to answer any questions I have.
The Doctor I originally spoke to said the other patient she diagnosed 12 years ago has gone on to live a 'normal as can be expected life' and there is no reason why my mum can't do the same. But I fear she is 'white washing' over the situation, just to give us all hope.
My mum is 64 and her visible symptoms have been some 18 months of dramatic weight loss (she now weighs 86 lbs) and has had repetative oral thrush and huge mouth ulcers which have on the most part, stopped her from eating properly. She is physically weak, because of her weight, can't go out alone, as she has lost all confidence and fears she may fall and in the last 6 months has been forgetful and confused when in conversation.
Are these signs of secondary infections (OI's I think)? Will her body be able to deal with such intense teatment at the age and stage she is at? I don't want to hear a Doctor telling me shes going to be O.K. because thats his job to, I want to hear the truth. Or am I simply just asking 'how long is a piece of string'?
I know none of you are Doctors, but I just want to hear the truth, however bad the prognosis.
Thank you for reading.

[Ann]

Joanne,

The doctor is correct - there's no reason why your mother cannot recover and go on to lead her life. The problems she has been having are relatively minor, in the bigger picture of hiv OIs.

The two drugs (more likely three, and quite possibly Truvada [which is two-in-one] and Sustiva) will bring her viral load down and gradually bring her CD4 counts up. It will take a little time, but it is amazing how quickly one can begin to recover once the meds are started. When you find out exactly which drugs she's on, you can look them up in the
Drugs section of this website.

Strictly speaking, there is really no way to know exactly how long your mother has been infected. Different people's bodies deal with the virus with differing levels of efficiency. Some people progress and need the meds within a couple years, others (like me) can go for ten years and more without needing the meds.

It sounds like your mother is in good hands. Hang in there and give her encouragement - and she'll get through this.

Oh, and welcome to the forum!

Ann

[Assurbanipal]

Joanne

Try not to worry too much about the long term.  Your mother needs your help and support a lot during this initial period, but if she gets over it and gets onto a long term HIV drug cocktail (HAART) that works she may well be just fine.  The most dangerous period for her is now when her Tcell counts are low and she has fewer defenses against infection.  The effectiveness of HAART doesn't seem to be affected by age, and it is good at stopping HIV from causing further damage to her immune system.  The problem is that HAART doesn't heal the immune system, it just stops HIV from harming it.  The immune system then has to heal on its own and that may take longer for us older types, but it still happens and many of us wind up just fine.  It takes time, patience and effort -- and there are no guarantees -- but your mother's doctor is telling you the straight story.

There's a few of us here who were diagnosed later in life and late in the progress of the infection.  Not in my 60's yet but I was just shy of 50.  For me, the first 2 months of recovery were pretty tough and that whole first 6 months I was pretty fragile.  But its been two years now, and I've been pretty healthy for the last year. My tcell count (CD4) has risen into the 400's (just shy of normal). I'm still working at getting stronger -- but you can't tell from the outside that I'm any different now.  

And, by the way, at 200 CD4 count, your mother is starting at 5 times the CD4 cells I did.

Be of good cheer

Assurbanipal

[joanne]

Thank you for your words of encouragement, I feel better already.
I have already had to promise her shes not going to die from this, or else she would give up now, I was just trying to convince myself the same.
She's in good hands and will have full support and encouragement from her family and thats whats most important right now.
Thank you again.

[J.R.E.]

Joanne,  Hows your mom doing ?


Ray

[med forum]

Never underestimate the power of support no matter how big or small! It will take time to adjust and the road may be bumpy and difficult at times but give yourself time.....this is all still fresh.

All the best
Renee

[BT65]

JoAnne, sorry for my late response.  I just wanted to tell you how much I admire and respect you for standing by your mum and supporting her the way you do.  It is truly admirable. 
   Luv,
Betty