Todd writes about the anxieties and benefits experienced when starting treatments.
I know too well these times can be full of doubts, fears, dark nights, and agonising over what's in store... it does get better, but that doesn't help when you're still waking up at 2.30am in the mornings in sheer terror at what may be happening to you. I first started treatments in 1994. The 'terror moments' have passed - but in remembering how difficult it was to try to find information that was right for me at that time, I've decided to write to you - someone recently diagnosed who may be asking a similar question.
I first had to ask this question for myself in the early ‘90s when HIV treatments were relatively new. Combination treatments had only just begun, and I was still in (healthy?) denial that HIV was going to be terminal (and still am). I had to come to terms with the fact it wasn't going to go away no matter how much I tried to ignore it. At the time I was in such a dilemma about what the heck was happening, and how to survive and make meaningful decisions that would help my body tackle this alien virus which was replicating at an ever increasing rate.
The thought of having to 'decide' whether or not to start treatments can be just as daunting these days because there is so much information out there. What or who do you choose to listen to? How do you know what's best? Why is it that so many medications list such a huge range of side effects? Who's right and who's wrong? Where do you draw the line?
Starting treatments is indeed a personal decision, and rightly so... it is a lifelong commitment if you're going to make them work. Just as important is that your doctor is spending time and giving you some guidance in 'starting to think' about it - rather than just stipulating where and when you start. Having a doctor you feel comfortable with and who listens to you helps, but for some (especially in rural areas) this isn't an option. For me, having a sense of control is still paramount in successful treatment.
Sure enough, treatments have changed a lot, but if you're new to even thinking about taking something on a daily basis, it's still a whole new way of 'self-management'. What about the side effects, whether the treatment needs refrigeration, how long has it been used, what if it gives you diarrhoea, how many times per day do you have to take it, do you need to take it with or without food etc. etc? Thankfully, some of these questions are actually less of an issue these days than they used to be.
For me, the idea of starting treatments was so daunting, I didn't even look at starting until my CD4 count was below 250, and my percentage was rising (we didn't have viral load in those days), and I could see real signs of the HIV having an impact on my body (ulcers, fatigue, thrush, food intolerance, etc.), but this is just the way I dealt with it at the time (and not a recommendation). Developing a case of shingles (which was fortunately very localised) was what really got me motivated. Historically my CD4 count has been low (some people I know have CD4 counts above 1000 - for me a count above 500 is my body's ultimate 'immune activity').
A definite benefit of going onto treatments was the sense of finally feeling in control. I was actually taking a stand and facing my situation head on, monitoring my HIV, lessening the fatigue I'd felt, as well as forging a more productive relationship with my 'care team' and doctor.
The other benefit was an immediate immune response, and a significant decrease in opportunistic infections (I hadn't realised just how much a burden they'd been until starting treatment).
So this was my experience... Should you start treatments?
I'd never recommend the time to start because there are too many factors to consider. But finding your own answer by seeking the opinions of others is an excellent place to start, and that's the real backbone to living longer with HIV. So my thoughts are with anyone who needs to read these pages, and I pray you find the answers that will help you make a decision you're comfortable with. That's the real factor of success. Good luck, and keep asking questions.
Todd has been HIV + for 17 years, and is also a member of MCC Sydney (www.mccsydney.org)
Todd's recommended resources:
ACON - Living with HIV Website
www.acon.org.au
I highly recommend the ACON treatments pages - found by first going to their home page at www.acon.org.au and click on the menu link within the top banner that says "Living with HIV".
They also recommend the following site which is excellent:
HIV i-Base - HIV treatment information Website
www.i-base.info
This is (in my view) one of the best sites I've seen so far. It's very comprehensive, clearly set out, easily navigable, and covers all ranges of questions, situations, and latest info. It comes recommended by ACON's website, and I can see why. It’s also highly recommended if you're looking for information on successful health outcomes, and being fully informed about treating HIV.
PS. And another good contact when you need to make treatment decisions:
ACON Treatments Officer
Tel: 9206 2000
Freecall: 1800 816 518
