Becoming a low-level Lab Rat

[thunter34]

Yes, chillruns...I am due to start participating in a small study as of this Monday.  From what they've told me so far, it has to do with dosing, adherence and level of personal knowledge about the medicines I am taking - as well as about the disease itself.

It's mostly gonna be a series of interviews - both in person and over the phone - but they are also gonna wanna suck some blood out periodically (which I hate to even already be thinking about - yuck).  There was another one they asked me to consider participating in, but it involved a lumbar puncture - and I just didn't know if I was down with all that.

This thing does pay something or other, but not much.  Not really doing it for the money anyway.  Just sort of feel like contributing a little blood and tears....just not lumbar level tears at this time.  I've done other studies for them - some involving several days stays at Grady.  Those weren't all that fun.  We'll see how this one goes.

No big whoop.  Just felt like posting something, really.  Something that didn't involve No No's, Noni Juice or Nigerian cures.

[Solo_LTSurvivor]

This is awesome, Mister Tee.  Just be sure and stock up on chia seeds before you dive in.

[freewillie99]

Something that didn't involve No No's, Noni Juice or Nigerian cures.

Noni Juice is delicious!

[thunter34]

Sooooooo....an update. 

My original start date for this got screwed up, and I ended up driving all the way down there and wasting an afternoon for nothing.  I got rescheduled, and did my first set of labs and interview.  Two things were gleaned from this:

1.)  I think it is now safe to say, some 10 years into infection, that I am all but certain to never become a junkie.  I am still such a total puss when it comes to needles.  I squirm, I tap, I hum, I look away, I b-r-e-a-t-h-e......

2.)  If you ever want another reality check about how easy so many of us have it with our current regimens, try performing the test I was given.  I had about a dozen bottles.  Some once a day, some twice, some three times, some four.  Some had to be taken with food, while others had to happen at certain points before or after meals.  Some couldn't be taken with certain types of food or drink.  I had to arrange a schedule for all the pill so that I took them at the appropriate times and with or without the foods.  I also had to be able to determine within the mountain of pills if I had missed doses of any of them, how many doses and, based on the labels of each, whether at a given time to go ahead and take the late/missed dose or wait until the next one.  I've been well over 95% adherent, but I still found this to get tricky.

Beyond that, the rest was fairly standard stuff about detailing how I actually carry and take my own meds, and my lifestyle choices and their potential impact on adherence.  (Does tweaking all weekend sometimes cause you to forget your meds?  Do you have a hard time taking your pills in front of a trick?  That sort of thing.) 

[leatherman]

2.)  If you ever want another reality check

ah! that brings back memories.  I remember when I dropped from 32 pills, tablets, gelcaps, and tablespoons of meds a day to only 28 a day and could finally go a whole 6 hours between doses.

did you find out what it was paying? just gas cards or somthing? LOL
how long/often is this study? it doesn't sound too bad - especially compared to lumbar punctures.

[thunter34]

ah! that brings back memories.  I remember when I dropped from 32 pills, tablets, gelcaps, and tablespoons of meds a day to only 28 a day and could finally go a whole 6 hours between doses.

did you find out what it was paying? just gas cards or somthing? LOL
how long/often is this study? it doesn't sound too bad - especially compared to lumbar punctures.

Oh, it's not really paying much of anything.  I think maybe $100 total, spread out over a couple of visits.  From where I am, and at today's prices, that's basically just gas there and back - especially when you consider that I've already taken one trip down there "on me" since the appointment got cancelled that day. 

I've done a few other ones over the years.  One involved staying at Grady for a couple of days.  I'll happily do what I can on that front from time to time, but I just can't see a lumbar puncture.  Yikes. 

[wolfter]

Sorry I missed this when you orginally posted it.  Are you actually taking different meds for this trial?  Why are they testing adherance for outdated meds?

Probably the most difficult med (in terms of convenience) was which ever one it was that had to be refridgerated.  What a total pain in the ass if you wanted to stay away from home for more than a few hours.  I think it was actually worse than the every 4 hour pill since my insomnia assisted with that one.

Be sure and post the study results.  I'd love to see what they're trying to garner.

Wolfie

[thunter34]

Sorry I missed this when you orginally posted it.  Are you actually taking different meds for this trial?  Why are they testing adherance for outdated meds?

Probably the most difficult med (in terms of convenience) was which ever one it was that had to be refridgerated.  What a total pain in the ass if you wanted to stay away from home for more than a few hours.  I think it was actually worse than the every 4 hour pill since my insomnia assisted with that one.

Be sure and post the study results.  I'd love to see what they're trying to garner.

Wolfie

No, I am not taking different meds.  And no, they aren't testing for outdated meds.  Lots of people have to take combinations of not only HIV meds but peripheral meds and sometimes the scheduling of them all can get complicated.  It's about finding what obstacles impede adherence to meds as a whole and what can be done to improve it.

[elf]

I would love to be in a survey.

I'm thinking of faking substance abuse, so I could take Antabuse for some months
(which would flush out my HIV reservoir, at least partially, but every single % counts)...