Friday, 16 May 2008

Liver holding its own - thank god!!!

The good news from the clinic is my liver seems to be holding its own with the HIV drugs! Well actually my liver it seems no longer has a problem !

My liver function blood tests were back to normal and the figure they were worried about better than normal!!!!
And my scan showed no sign of an abnormal liver - no cirrhosis etc

This is probably been helped by my cutting out my lovely red wine to a considerable extent since I have been on the HIV meds. As my liver was probably temporarily under stress when they took the tests due to the fat I was drinking an awful lot to cope with finding out both me and Barry were HIV and him being in hospital at deaths door!!!

As the only on going difficulty with the HIV meds is that they actually make me feel sort of drunk!!

About half hour after taking them I feel drunk but without the good bits, and then you can not really interact sensibly, and then mostly I conk out!!

This does not happen to everyone but have heard from several others that it does on this particular combination of HIV meds -

Both Barry and I are on the Sustiva/Truvada combination

and it affects both Barry and I like this ........

....................and we take them at around 9 am as we have found that if we take them later we feel a sort of 'hungover' by the time we wake in the morning, and the absolute latest we can take them to avoid this is about 9.15 as we seem to need to completely 'sleep off' the drunk feeling effects to avoid feeling sleepy/disconnected /hangover all day.

  • The positive side is my consumption of alcohol has gone right down to practically nothing
  • This is because I am no longer drinking to cope with stress and I used to do most of my drinking in the evenings and of course by the time I have done everything, cooked the tea and sat down there is not much time to drink, if any, before I have to take my tablets. And they make me feel drunk anyway although not in a good way and alcohol makes it worse - so I rarely now have more than a glass on a regular basis!!!

Yet even though I told the clinic this yesterday and my latest liver tests were not only fine but actually very good - they still managed to make me feel guilty for drinking at all.

Why should I not have the pleasure of a glass of wine with my meal etc or a couple when out at the local?

Why does the bloody GU/HIV clinic manage to make you feel a complete failure, even when you have made huge efforts - just because you do what thousands of people do every day. I do not see why having HIV means I should have less pleasures than most other people available to me?

I tried to say this to the registrar I saw and she had the cheek to say - that perhaps I should look at why I needed alcohol to feel OK . This was not my point and NOT what I was saying, she just was not listening to me really at all and this makes me so absolutely MAD!!!!!

As this was not what I was saying - I do NOT need my wine to make me feel OK.

Yes I was for a while using wine for self medication due to feeling so crap due to untreated HIV - that I did not know I had !!!!!!- and plus the pain from my horse riding accident and the emotional pain of having a husband working away which never suited me at all.

I was fully aware I was doing this but now I am not as all my needs to self medicate have gone!!!!!!

It is their job to give me the medical facts and let me make the choices - not to make assumptions and not to judge!!!

In fact now I am being treated for my HIV I feel a lot better physically and mentally and I have never been depressed and am not depressed. All I am saying is I still enjoy my wine!!!! - yes I accept that over the last 3 years I have drunk too much and the HIV is a wake up call - but I am not using it as my only way of feeling OK !! never have really.

  • God that clinic makes me so mad - I can not believe she and the others do not have a drink !!!!! Yesterday made me totally furious!!!!!!

    What do they want - blood - yes they do want blood and lots of it but they also seem to want emotional and self esteem blood too !!!!

That somehow if you have HIV you are not even allowed the pleasure of a glass of nice wine

I fucking hate that clinic !!!! I can do without their judgmental crap!!! It is up to me what I drink and I am doing pretty well thank you!!

Even my liver is saying so!!


Wendy said...

Hi Veritee,

SO glad to hear it xx

Veritee said...

Thanks Wendy

Yes its good - as at the very least the consultants fears of my liver not being able to stand the HIV meds was wrong. I think she based this on my honesty that I enjoyed a drink and made soem wrong assumptions - basically treated me like I was a serious alcoholic!! which I resent.

But if my liver blood tests were better since I have been on the HIV meds and totlaly normal - then I am assuming it is all OK. Least until I am proved otherwise.

Anonymous said...

Hi Vee

I know its not the same but I have always been getting a battering about drinking wine by my mental health team. I have explained to them that I know the affect that alcohol has on my body and my meds but I really dont see anything wrong with me doing something I enjoy and they still batter me about it! The whole point of working in the medical proffesion is to respect a patients wishes and they just dont get it. They think they know better than I do what I should and shouldnt do for myself! I am not stupid, I know alcohol isnt good when suffering PNI, but it has been my one pleasure even before getting ill, and it is bad enough having so much to deal with without having someone trying to take your pleasure away.

Anyway, the point is I am so with you on this one and fully understand your anger.

Great news on the liver test! Just proves how well the body can recover! Fab xxx

Love Helen (WG) x

Silvia said...

Hi Veritee,

I just would like to thank you for sharing your story with such honesty. It is very powerful. Really nice talking to you yesterday and I hope we will meet one day.

Lots of love


Veritee said...

Thanks Silvia

It was great talking to you too
And I am looking forward to meeting others at the next regional coordinator meeting - I am afraid it was just to short notice but I really hope to get to the next one