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HIV Life >> Living With HIV


Reged: 11/30/04
Posts: 113
Loc: United Kingdom.
Re: Life with meds years later
      01/05/12 01:18 PM

Hi RiverPrincess,

I was intrigued to see your posting because I am very concerned about this issue of what is happening to us either as a result of the continuing, though lowered, presence of HIV or as a result of the anti-retrovirals that we are taking.

My concern is that when I report side-effects or physical problems to my HIV specialist or one of his specialist nurses they don't respond with great concern but do write what I say down in the file that they keep on me. However, I don't believe anything at all then happens with those notes. I don't believe they pass that information on so that it is all pooled and analysed by computer at some important medical centre.

And I believe my doctor should be passing my feedback on! Why? Because when combined with the feedback of other patients it will be meaningful and could be valuable!

What actually happens when I report a side-effect or a physical problem is that the doctor and/or nurses just look very sympathetically at me (easy to do) and then they just shrug their shoulders and either say that the problem I'm reporting is:

- just a common result of HIV infection or ARVs
- nothing to do with HIV infection at all
- nothing to do with ARVs at all

So despite the sympathy, each of the above responses just dismisses whatever problem I have reported!

I want to grab them by the shoulders and shake them and ask, "But how do you KNOW?"

Because they should be listening to ME, to US! We are the ones who have the virus and we are the ones who are taking the ARVs!

ARVs started appearing in the mid-90s and all new ARVs are always tested on a group of patients, but it seems that my HIV doctor and HIV nurses have decided that the data stops there! That someone else does the data analysis and that the data analysis has been done, once and for all.

But that is surely so wrong! Why? Because HIV continues to work cumulatively in the body. And the continual use of each ARV has cumulative effects. AND WE are the very people from whom scientists should be taking feedback and analysing it.

But at my clinic they really are NOT interested. It's just about taking our blood, seeing whether we're becoming resistant, and switching us to new drugs if need be. Yes, they patiently write down all the aches, and pains, and side-effects we report . . . but they're only doing that to make us feel "listened to"! They're not passing that information on up the ladder to anyone!

On three or four occasions when my doctor or one of his nurses have told me that one of my conditions is NOT one of the side-effects of my ARVs or HIV I have gone home and done lots of googling and I have found that they were wrong! When I then pass that information to them they either simply say nothing at all (they simply don't respond), or they respond in a defensive way, perhaps by saying that the information is not relevant to most of their patients. In fact, I can tell they really don't like me doing any research at all. They just want to give me the drugs and get rid of me.

Why is this? I put it down to "fatigue". My doctor and nurses have all been working in HIV/AIDS since the 80s. They went through that horrific period when nearly all of their HIV patients died in awful circumstances. That's no longer the case and they think we should now be very grateful and just take the meds and shut up. They're tired. They've been at this game for a long time and they really don't have any energy left either to help find a CURE or to work hard on eliminating the long-term effects of ARVS and HIV.

The worrying thing is that I have observed that my doc and the older nurses are passing their attitude on to new and younger nurses.

Without a dream, life is a broken-winged bird that cannot fly. Keep hold of your dreams.

Post Extras: Remind Me!     Notify Moderator

Entire thread
Subject Posted by Posted on
* Life with meds years later riverprincess 12/25/11 06:09 PM
. * Re: Life with meds years later BrokenWingedBird   01/05/12 01:18 PM
. * Re: Life with meds years later honeydew   06/05/13 11:08 AM
. * Finding the good doctors BrokenWingedBird   06/05/13 11:52 AM
. * Re: Life with meds years later riverprincessModerator   01/05/12 02:26 PM
. * Re: Life with meds years later LittlePal   12/30/11 05:00 AM
. * Re: Life with meds years later Pos_in_Thailand   12/30/11 04:42 AM
. * Re: Life with meds years later JPalmer   12/30/11 02:08 AM
. * Re: Life with meds years later riverprincessModerator   12/30/11 12:07 AM
. * Re: Life with meds years later hrmrhiannon01   12/29/11 10:47 PM
. * Re: Life with meds years later Pos_in_Thailand   12/30/11 04:50 AM
. * Re: Life with meds years later riverprincessModerator   12/30/11 12:01 AM
. * Re: Life with meds years later mkaipo1   12/29/11 08:24 PM
. * Re: Life with meds years later riverprincessModerator   12/29/11 02:54 PM
. * Re: Life with meds years later mamimilli   12/28/11 05:54 PM
. * Post deleted by Becky AIDS2HIV   12/26/11 02:28 PM
. * Re: Life with meds years later Tyguy64   12/29/11 07:45 PM

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