Saturday, 16 February 2008

My results - Basically I drink too much!!

Something I was already well very aware of - but it seems now I have no choice now but to do something about it?
I have not been well for the past year or more both physically or mentally. My behavior at times has been erratic, my memory much worse than can be explained by age and I have constant bouts of vomiting and other stomach problems.

I did put this down to trauma after my horse riding accident but it seems that HIV may have been slowly damaging my brain and my memory - It does 'silently;' do this to some infected people. I have to have a MIR and loads of other tests to find out.

Left untreated, in some people attacks the brain and effects memory, mood and emotions rather than they get ill with infections. I am now having tests for this but am pretty sure that from the way I have been I already - and other neurological symptoms - I have had some brain damage. So is my HIV consultant. I also drink too much which can escalate such brain damage from HIV, in a way it does not if you do not drink more than moderatly.

But my 'mental' symptoms may have been escalated by the amount I drink!!!

My alcohol consumption may not have been a real problem - at least not as yet - to someone without HIV, but HIV itself reduces your liver function and alongside too much alcohol this would escalate any mood changes and memory and behaviour etc

But the trouble is having HIV makes me even LESS WANT TO BOTHER TO DO SOMETHING ABOUT IT.

Pleasures in life are so few anyway, life is short and now could be a lot shorter than I ever expected and I love my glasses of red wine.

On the 13th Feb 08 we went to the clinic for our appointments - for Barry to get the OK to start on antiretrovirals and me to get my results and see if I have to start them too.

Barry was told he was well enough to start - thank goodness for that as he has been a lot iller than I am or have yet been.

But thankfully his PCP Pneumonia is now under control although he will have to take medication to prevent it getting a hold again for the rest of his life....................

......................and surprisingly his liver and kidney function has gone very quickly back to normal since he stopped the Septrim medication that so disagreed with him - and so we saw the pharmacist on Wednesday to get the HIV meds and a run down on what side effects to look out for that could be dangerous to him - a blistering rash seems to be the one that we would need to call an ambulance for - but it seems he is alright as he has now taken them for three days with no bad side effects at all - so far!

As to my results

They were quite strange really........ but explained when you consider that I drink too much and have HIV.

As from what I have read I have a very low virus load for someone who has had HIV for a few years without knowing it, I only have a virus load/count of 264 - which is very good .

But my CD4 count is pretty low, too low, which is bad.
'Normal' CD4 is between 500 and 1500

Mine is not as low as Barry's which was only 9 when he was first tested, but he had a virus load of 55,000 + and was very ill, almost at deaths door!!!!!! with PCP pneumonia, so that was understandable, as when you are that ill your TCell count will be very low.

So my virus load is quite good - only 264 - very low - which is good - for untreated HIV.

But my CD4 count ( my immune system Tcells) is only 289, I am only 89 off of being defined as having AIDS and 350 is the level they recommend in the UK you start HIV drugs!! So as I am not ill - well not with any opportunistic infections anyway - it should be much better than this!

So it looks like my immune system is 'buggered' and because I have a low HIV virus load it may not all be explained by HIV??!!! However to fight HIV it helps to start with a good immune system that has not been compromised with other factors - and HIV and drinking too much are a BAD combination.
Drinking in moderation is fine when you have HIV, but not over 'moderation'.

So I am not starting HIV meds yet partly as it may be that I have other reasons - apart from HIV or together with it - why my CD4 count is so low.

And one obvious one is my liver - and it seems this is a problem.

I have been aware I have knocked my liver for the last 8 years, but had no idea my drinking red wine of an evening would do this much damage!!!
All I can say is if you drink regularly - get your liver function checked!!!

- I have been drinking this for no more than 8 years because I really was a non-drinker except very occasionally on social occasions before this. YES truly I was almost teetotal until my 30s !!! I never drank at all though out my adolescence and through to my early 30s only on social occasions and then only very moderately - after this I drank at most one weak beer on an evening very occasionally, but usually only lemonade or coke in pubs, at most one or two beers - only since I married Barry did I then start to have a regular social drink at a pub.

Because he loves his real ale and I wanted to keep him company. To be honest he WAS a drinker when I met him, - but not now - how far the tables have turned!!!!!

Stopped drinking again altogether when pregnant and when I had PNI and for some years afterwards I did not drink at all. But about 8 years ago I started to drink regularly for the first time in my life ( around 47/48 years old) and far too heavily.

For many reasons and mostly loneliness when he was away at sea - no excuse I know!!!

Started with a glass or two of wine while away the long boring evenings when Barry was at sea, and it escalated almost without my realising how much - and now I just drink far too much and on most days. I do not get drunk rarely at all now as I am so used to it.

Now the test results showed that yes I have indeed knocked my liver.

I do not really understand the results as yet - but an 'acceptable' liver function reading at the lowest level would be 46 and mine is 36!!! Not as bad as it could be at all for someone who drinks almost every day, but still not very good when you have HIV!

Whatever else it means - it means I HAVE to stop drinking if I am to stay alive with HIV as long as possible as most HIV medication is toxic to the liver to some degree, so it is best to start with a good liver function. I am not.

Social or moderate drinking is fine with HIV, but apparently this means one or two glasses an evening, not the level I do it .

So it seems I have to see a liver and stomach specialist before I can start on HIV meds. ( as I do have distressing stomach problems that have got worse recently and apparently this could be related to my liver function)

I also have to have a MIR scan due to memory loss and other brain damage - which apparently is real and not imagined - and a Ophthalmologist specialist for my eyes.

I have to have all this before I go on HIV medication.

If you have lowered liver function they have to be VERY careful about the HIV meds you take.

I have had a chest X ray on Wednesday to see how my lungs are doing. My bloods will be monitored regularly and unless they get dangerously low, I will not go on the meds until I have had this barrage of tests.

This does suit me anyway as I do not want to go on them until Barry is settled into a routine with them as it is better one at a time rather than both together

but it is very worrying that I have to have all theses tests, and mostly because I drink too much !!!

One thing you do get when you have HIV is a thorough medical overhaul, they look into everything in the finest detail and you get appointments with specialists for anything that shows up and very quickly - when without HIV you may have to wait months to see the same specialist unless you are private.

Not sure what I think about this as yet??? Not sure that just because you have HIV you should have access to medical treatment more promptly than most other people who are NHS and not private do? I will have to consider this situation further!!!!!

All the damage to my body known so far i.e memory, immune system, stomach, liver and eyes could be drinking or could be HIV, but probably the combination of both.

- do not know yet but they need to find out before I start HIV treatment apparently, as it could very well be either.

I do wonder what they would have thought about my low immune results if I had not been honest and told them I felt I drink too much for my health???? How many would have been a honest as me I wonder?

As I am not a drunk in that I am rarely fall down drunk - well actually never, I have never in my life been drunk in any way that I forgot what I did, was not in control and not able to look after myself and function -

It is not often can anyone tell I have had a drink at all unless they have seen me drink it. Everyone I know well will confirm this. But just the same I know I drink too much wine, and have done for about 8 years!!!

I guess I come under the category of 'middle class wine drinker at home' there are thousands of us and few realise until the chips are down that this nice comforting habit could be so compromising their health - and their liver - to the degree it actually is

Not until the 'writing is on the wall' as it is now for me.

But then how many ' middle class home wine drinkers' will find they are HIV positive?????

If there are any others out there in my position reading this - contact me, I could do with some mutual support!

I now use alcohol as part of my daily routine and daily life and I know it is far more than I should for my health, and have developed a tolerance to alcohol so I can drink a lot with no huge discernible effect.

But I never binge drink, rarely if ever, get drunk - except deliberately I have a few 'over the top' when upset to drown it and that is not often theses days.

How many others have livers though regular evening wine drinking that are functioning less well than they should be? I guess loads of people who just do not suspect it has done them any harm!

The trouble is with HIV, you have no where to hide and you get away with absolutely nothing. Everything about your lifestyle and habits are in the spotlight.

From your sexual encounters, yes you are asked abot this a lot .............

( in my case this is not of any interest as I only have sexual encounters with one person for more than 20 years and at the moment even that is not often - and with HIV I will never risk having sex with anyone else for the rest of my life!!!!)

Drinking, eating, smoking and drug taking habits........ I have no eating disorders, I did smoke rarely but gave it up for over 10 years, unfortunatly have started agian last year, hope to stop agian soon.

But what I really object to is I keep getting asked if I take any drugs - I don't - none at all, not even anti-depressents etc - how many times do I have to say this? - why do they have to keep asking!! Is there an assumption that if you are HIV positive you have to be taking drugs of some sort or another???

(I do not take any drugs - either prescription or otherwise so this is not of any interest)

but the one thing I do is drink too much.

But if you want to survive HIV as long as possible you can hide nothing - you have to be honest about everything whatever it is!!

Suddenly you are stripped to the right to decide what you do with your body/health and the right to privacy about it!!!

This is all why for me that day I got my results was a 'sobering' day!!
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