Wednesday, 2 April 2008

I was told I have refused HIV medication!

I think this has started to be sorted out now - I so hope so as it is so very important for me it is - basically a matter of my life !!

But I have been very distressed since Friday afternoon when I rang the HIV/GU clinic to get the results of ym last CD4 tests.

I did not talk to the consultant! You never get the consultant. If you phone the clinicyou get the HIV specialist nurse and she them -passes on your enquiry to the consultant if she feels it is 'necessary'!!!!

I phoned the clinic last Friday 29/03/08 to get my latest CE4 results and because I found that they had gone down slightly (I do understand that this is not significant, but it is still in the wrong direction for me).

Because of this news and because my next appointment with the liver consultant is not now until 23/7/08 I felt I can not wait until I see the liver consultant again to make some decisions. So I felt it was time to discuss going on HIV antiretrovirals and to get my treatment with them established quite soon.

However the HIV specialist nurse seemed to be under the impression that I have refused to go on such treatment?

God I was so in shock, when she said this!!!!!

Where did she get this from? - does she think my wish is to sit here and wait to get AIDs related illnesses and then wait to die????


In fact how could it happen that I have 'apparently' made the decision not to go on HIV meds without my knowledge of this and without my ever having a conversation about going on meds with my consultant ?????

The nurse further added that having refused treatment it puts my consultant in a compromising position if I am now asking for it.
(This may not be word for word but it is the gist of what was said during the phone call)

It w as my understanding that as an HIV patient, it was my prerogative to air my fears at any time, go through the mental process/adjustment I had to, and decide at any point that I so wished to go on HIV medication? This has been a huge shock which has required much adjustment, and emotional pain, and it was something I needed time to come to terms with.

And as far as I am concerned, I have never absolutely refused HIV treatment
?

This phone call made me realise how great the misunderstanding between us - me and the consultant and indeed the whole HIV team there - that may have been.

I accept totally that this may be due to the fact that I have been in complete shock over my HIV diagnosis and the ongoing implications to my life and consequently I have been ‘understandably’ very distressed during my three visits to the clinic and therefore have been offloading and sounding off.

However even though I accept responsibility for my attitude leading to any misunderstanding, at least in part, I obviously can not continue indefinitely, with HIV, with a CD4 count under 300 and without HIV any medication, as my very life and health may depend on getting established on such medication as soon as is possible?

I also did not realise/beleve that it would compromise my consultant in any way, i.e. to delay or even refuse HIV medication and then change my mind at any time in the future?

Surely this is up to me!!!?????

I have indeed profusely expressed my fears, concerns and distress, but not refused HIV medication.?


In fact I am not aware we have ever had this discussion i.e. about whether I should start HIV treatment, when, and the pros and cons for me of such treatment?

As I said to the consultant I am someone who finds taking medication difficult and this is something that will be very hard for me, but something obviously I have to do?

I wanted support for this and understanding of how difficult it will be. But I seem to have conveyed the idea that I will not go on HIV medication when this is not the case?

In offloading /sounding off I was looking for understanding and support, not for it to be taken as if my fears of taking this medication was my final word and what I wanted was to never take medication for HIV and just wait to get ill and perhaps AIDS. I do not want this. I have many responsibilities and a lovely daughter to stay alive and healthy for as long as possible.

I expressed my my fears, confusion and total shock in an open and perhaps expressive way but I was NOT saying I did not want HIV medication!

So I wrote to my consultant to make it clear:

1. That my initial wish was to delay taking HIV medication myself until Barry was established on them. My reasons for this is that I/we knew/know that taking such medication will for me be very upsetting and because Barry has been so unwell I wanted to be in a fit state to care for him, rather than being preoccupied with the difficulties I will have in taking this medication

2. Now Barry is established on his medication, doing far better and much less ill, I would like to start on HIV medication myself.

3. I will undertake when I next come to the clinic, to discuss this in as unemotional manner as I possibly can and want to now be put on HIV medication as soon as possible
Therefore I would like an appointment as soon as possible to discuss this

If this is not possible between us – i.e. the damage has been done to our working relationship by my attitude and your response to how I had/needed to cope with my diagnosis - I would like to see another consultant

I would further like to reiterate that my anger is not aimed at you personally; or anyone at the clinic. I am very sorry if my attitude/response to my HIV has caused anyone any difficulty.

My anger and distress is with the fact of my HIV positive status and the way I acquired it, i.e. the fact that as well as HIV I am having to adjust to the reality that the man I have been faithfully with for nearly 30 years was unfaithful to me and brought this horrible virus into our lives – a double ‘whammy’ I have to come to terms with.

It is unfortunate that I have reacted this way, but I was not to know how this dreadful news would affect me nor have I ever been in a similar situation, so the way I am reacting is quite a surprise to me too.

But it is not in any way directed towards you or your team.

What I need from you and the HIV team right now is the best medical treatment you and your team can offer that will give me the best change of living as healthily as possible to see my birth daughter, and everyone else I care for, through the next crucial years of their lives.

And I want you to help me to do this.

I would deduce, from my extensive reading that the only hope of a longer and healthy life from now on is to take HIV antiretroviral medication?

So I now want to do this as soon as possible

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