My beloved son has been diagnosed with HIV - please help me x

(15 Posts)
InUtterTerrorPleaseHelp Sun 07-Apr-13 22:31:53

My beautiful and gentle 21 year oldest child has, I have just discovered, been diagnosed with HIV. He was brutally attacked previously which I did know about and supported him through. He did not tell me when he found out as it was whilst my only parent was terminally ill, dying 7 weeks ago.

I found out in the worst way possible - in his room here (he lives away as studying and I NEVER invade his privacy which is why I guess this stuff was so immediately apparent) I had to go in to retrieve a DVD of youngest DC. On top of DS's stuff was a letter re appts etc, and the triple meds which I recognised immediately (as a friend of mine has HIV.)

I felt like had been hit by a truck. I wanted to die.

DS is coping well, but I am not. I know it is likely even with the triple meds he will die before me (can barely even write that sentance). Saw support on here for parents and don't know if this is right place to be but need post somewhere or will lose my mind. Mad though this may sound (apart I guess from people who have lost a child - as I already once nearly lost this child - or parents who have a child diagnosed with what will be a life-limiting illness), saw a thing on FB re 'woolly blankets' stiched with love and care from those those don't even know. I desp want my son to have one of those so he knows is enveloped in a wall of love.

Please help me. xxxx

QOD Sun 07-Apr-13 22:34:50

You've told him you know? How was he? Relieved?
I'm sorry, what a rotten shock sad

sybilfaulty Sun 07-Apr-13 22:38:24

Have you had a chance to talk to him? I am so sorry for the shock. Many people do live well with HIV for many, many years. I have two friends who have been diagnosed since the 90s and are both well and in great nick.

Sending hugs and positive wishes to you both.

What an awful shock, but HIV meds are amazing these days, I read some where the other day that a man in his 30s/40s diagnosed with HIV has a better life expectancy than a man of the same age diagnosed with diabetes.

JennyPiccolo Sun 07-Apr-13 22:45:17

That's an awful shock, but as has been said, it really isn't as bad as it used to be. I know it must be terrifying, but if he looks after himself he will have a long life.

VenusRising Sun 07-Apr-13 22:47:20

I'm so sorry that you have to deal with this, but I have a lot of friends who have HIV, their life expectancy is very good, and with the drugs, their viral load is negligible.

They won't go on to have aids. Being HIV positive isn't a death sentence.

Maybe you could ring up a HIV positive phone line to relieve some of your anxiety and put your mind at ease.

Again best wishes to your family.

invicta Sun 07-Apr-13 22:48:04

Have you spoken to any charity linked with this condition? They can provide you with the support you need.

Like Scary said, today HIV is not considered a death sentances anymore, but a condition people live with.

I've very sorry you have had this news. But as others have said HIV today is not the death sentence it used to be.

You will find a lot of support here if you need it, but perhaps you might want to ask for this thread to be moved from bereavement as you are more likely to find the help you need in one of the health boards.

I wish you and your son well.

5eggstremelychocaletymadeggs Sun 07-Apr-13 22:56:42

What everyone else has said, this is shocking news but nowadays the treatments etc are much better.

I def think getting in touch with relevant charities is a good idea xxx

hurricanewyn Sun 07-Apr-13 23:02:26

Oh InUtter it really isn't the death sentence it once was. The diagnosis is terrifying, it has such fear & stigma around it, but treatment has moved on so much.

I've just finished a stint in a GU medical centre where they ran a HIV clinic & the consultants there likened it to living with a long term condition like diabetes or asthma - always there, but once it's well controlled it doesn't need to effect you day to day.

Speak to your son. See if you can go along with him for an appointment & talk to his doctor. They'll help to reassure you.

(Has your son received counselling following his attack - the clinic should be able to help him with that)

InUtterTerrorPleaseHelp Mon 08-Apr-13 09:57:42

Thank you all so much. I will speak to one of the charities, hadn't even thought of that as was just so poleaxed.

He had huge counselling/psycological support re attack (all private as NHS was lamentable in helping, but at least that did mean he had all he needed and more), and I think that must have helped hugely when he found this out. He is handling it astoundingly well and is almost sanguine about it (in a good way, not a casual way if you know what I mean).

His viral loads are negligible and he take his meds very precisely. Think the reason he is more sanguine than me is (apart from fact of shock which obviousy knocked me sideways) is that he too doesn't see it as a huge deal in sense of 'illness'. His doctors have also apparently likened it to diabetes etc as long as he is stringent with tablets etc. I'm guessing my innate terror and his being more laid back about it is probably also generational. My perception is obviously borne from 80's when it was a death sentance and when the Middlesex (??) Hospital in central London was full of people who went in and never came out. Other than that, I knew nothing other than the friend (more of an acquaintance TBH) I know who has it and who took HIS meds once after a dinner somewhere (hence my recognising them).

Do feel bit of a twat now know a bit more for posting but was desperate and terrified. Still am to a degree as know there are other implications too, but the main thing is my son is fine both healthwise right now and also in the way HE has handled it. Am in a weird place of both so sad (& angry) this has happened to him but also so proud of him for way he is just getting on with it. Also of the role reversal bit where he (we normally talk about everything) chose to not tell me as I was subsumed in nursing my dying parent and then their death. He was devastated that I had found out the way I had, as he had planned on telling me but in a way that was less shocking than it transpired to be.

Thank you all again for your advice and kind words & advice. thanks

MrsMargoLeadbetter Mon 08-Apr-13 11:19:05

InUtterTerrorPleaseHelp on my goodness you are not a twat. It must have been such a terrible shock. I really feel for you all. To be attacked and now this & a family bereavement all within weeks/months. You really have been through it.

I too was very affected by the 80s messages and have what I would describe as irrational fear of contracting HIV despite my low risk life style etc (not that you can prepare for being attacked if that is related - you don't have to say). So I share your perceptions despite the fact as others have said things have moved on.

As you might know there have been some very early breakthroughs in treatment - www.bbc.co.uk/news/health-21783945 - it is not infeasible that a cure could be found sooner than later.

You sound like a wonderful mum and he sounds like a really nice young man.

Sending you both lots of good wishes and flowers.

duchesse Mon 08-Apr-13 11:21:26

Oh Lord. You poor woman. As everyone says they are doing fabulous things with the drugs that are being developed now. <hugs>

EasterHoliday Mon 08-Apr-13 11:26:49

A dear friend of mine was diagnosed at a similar age though caught it through a combination of foolish high jinks & astonishingly bad luck. He was smart enough to get tested however.

Years later, he is probably one of the healthiest people i know - competes in hardcore sporting events of all types and lives a very outdoors life. He has children (sperm washing) and lives a very full life. Being careful and living with it sensibly is all that counts. There is no reason he will have a reduced lifespan xx

katvond13 Thu 02-May-13 15:40:55

Know this thread is almost a month old but thought I'd write, anyway.
I found out I was HIV+ during my 1st pregnancy with the standard blood tests that do at 12 weeks. So say it was a shock is an understatement as I've never been particularly promiscuous and nor has partner (who was also diagnosed HIV+ after me).
I'm a big worrier, it's in my genes, but this is something I just don't dwell on. The reason why is because I've received such good service at my clinic and know all the facts. With treatment, as longs as there's no complications (adherence, resistance etc..) YOU are going to go before he does. Whilst on meds and once you've reached undetectable you no longer have the virus in your system (its dormant, and whilst it's dormant can do no harm), and his immune system will recover as longs he was diagnosed not too late, which is unlikely considering the age he is - My partner was diagnosed with a CD4 of 160 (average negative person is from about 600 to 1200) and after 2 years of treatment is at a CD4 of 700 now (and still rising). He's as healthy as can be.
What you've also got to realise is he'll have regular checks and doctor appointments so will always be on top of health. How many times have you heard people say they've got a problem but can't be bothered to visit doctor? A lot. But with your son if he ever got a problem he knows he'll be seeing a doctor in a few months at the most so isn't going out his way to speak of his problems so is more inclined to be diagnosed with anything a lot earlier than most people (cancer, high cholesterol etc...) The blood tests pick up any health problems that can be detected through blood. Partner had high cholesterol that showed in his blood tests and was able to do something about it by simply cutting out his daily chocolate bar so is now under control. That could've been left until it had done some damage to his body or was too late.

Speak to someone at his clinic they'll tell you all you need to know and put your mind at rest smile

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