Sometime last week I appear to have missed my hep C meds. I still can’t figure out exactly how it happened. When I went to take the evening dose, it looked as though I had taken it in the morning, by mistake, but when I was still using the same packet by Sunday, the greater extent of my mistake was clear. I know there is some tolerance with dosing times and if you miss a dose accidentally, the best thing to do is just take the next dose at the usual time. But because I feel so lucky and privileged to be on this trial, I was wracked with guilt at potentially messing up my treatment. I contacted the trials nurse to “confess”, and of course she said “Don’t worry about it”. I am just a bit disappointed in myself.
After 19 years of taking HIV meds every day, you would think I would have this completely sorted, but it seems not. At home, I carefully lay out all the pills for both of us (and between us there is quite an assortment) while my partner makes breakfast. We always have them with juice and we always have breakfast. These things work as a memory trigger and also minimise any nausea that might occur from taking them on an empty stomach. Even if we go out for breakfast, it’s the same routine: juice, pills.
Away on holidays, life is less about routine. We don’t have the dog to walk or work to go to and we might just as easily sleep in till midday or stay up all night talking. How then do you remember to take the meds at the right times, especially if you have a complex dosing regime to stick to like me? I have seen old people using blister packs made up by the pharmacist, organised by day and time. In the bad old days of interferon based treatments, I would tick off every Friday’s injection on the calendar. Others prefill plastic boxes supplied by the drug companies, with each day’s dose. I have always preferred taking each drug out of the pack just before swallowing it, taking some pride in understanding exactly what each one does and why I am taking it at the time I am. For me this is about being actively involved in my treatment, giving myself a bit of love, knowing I am doing what I can to ensure I die of something else other than HIV or liver disease.
Adherence is important. But remembering to take the pills everyday, twice or three times a day, I find can still be difficult, especially if my routine is changed. I’m always up for hearing ideas that would help me be better at remembering?
The opinions expressed here are mine alone and not necessarily those of my employer.
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