Living With HIV
Hit the Road, Jack (and Jill)
Have You Got Both HIV and Wanderlust? Here's How to Cross Time Zones and Continents -- Even Oceans -- Without Missing a Single Dose of Your Antiretroviral Medications
Once upon a time, I took only one anti-HIV drug each day. Those were certainly simpler times: I'm now on a five-drug antiretroviral cocktail, which I supplement with 16 other medications (everything from megavitamins to pills that prevent PCP). I didn't realize it when I started therapy, but stuffing a couple of pills in my pocket and remembering to swallow them at specific intervals throughout the day was a piece of cake compared with what would follow. Twice-daily dosing with a single anti-HIV agent is a thing of the past -- and a goal for the future. Now I'm a poster child for compliance with combination antiretroviral therapy. A poster child who travels -- a lot. In my capacity as an advocate for people with HIV, I'm on the road at least half of every month. I shuttle regularly between the east and west coasts, and I touch down at many spots in between.
My traveling companions these days come in many sizes, shapes, and colors. They are my meds. Some require more specific dosing than others, but all of them need to be taken every day. Collectively, they're a handful -- and I mean that literally. But ultimately, they're part of my team in my long battle against AIDS, so accommodating them is both appropriate and necessary.
Traveling with your anti-HIV drugs -- and staying on your assigned dosing schedule -- can seem a bit daunting at first, but HIV shouldn't "ground" anyone who wants to see old friends or new places. And once you get the hang of it, it's really quite easy to manage your meds while you're on the road. Here's what experience has taught me:
The first big challenge you face, when you travel with your anti-HIV meds, is remembering to pack them! You're counting out underwear for the trip...and calling upon all of your psychic powers to help you predict what will constitute appropriate attire for the events you've got to attend and the weather you may encounter...and suddenly you think, "Yikes! My pills!" What to carry them in? If you pack them all in their original containers, you'll need to rent a stretch limo just to transport all those meds! But this is what Zip-Loc bags were made for. (I prefer the heavy-duty freezer-strength bags with the sliding closure thingie, but any kind of resealable plastic bag will do.)
One of my protease inhibitors cannot be exposed to sunlight, so I leave it in its original bottle, which protects it from exposure to light. But the rest of my pills can be counted out and tossed into a series of small Zip-Loc bags. If you know your pills and your dosing schedule by heart, you can even toss all your pills into one bag. (I think of this bag as my trail mix for the nineties.) Friends of mine prefer to carry their pills in recycled, relabeled film cans -- and one friend uses a small plastic tackle box to carry all of his drugs when he travels.
Now, where to pack your pills. In a carry-on bag -- and nowhere else. Why? Because if you put your pills in a bag that you check, it is all but guaranteed that your bag will be the only one, out of the 2,000,000 pieces the airline handles that day, that will find its way to San Jose -- while you are en route to San Juan.
But that's not the only reason to pack your pills in a carry-on bag. If you put your pills in a bag that you check -- with the thought that you will take your next round of pills shortly after you arrive at your destination and claim your bag -- you are inviting travel delays. It may be a summer thunderstorm, boiling over O'Hare, that holds you up. It may be a winter "white-out" at Denver International. Or it may simply be a mechanic, at any airport anywhere, who happens to drop his screwdriver into the engine of the plane...and keeps you sitting on the tarmac for two unscheduled hours. In any case, delay is a possibility whenever you travel. And because you need to take your medications on time, whether the flight is on time or not, you need to have them with you at all times.
So, once your pills are packed and accessible, what else could possibly interfere with your daily dosing schedule? Well, if you have ever flown across the country, you may have marveled at the amount of time it takes a pack of flight attendants to get down the aisles of a 747 with a three-ounce beverage for each passenger. By the time your mouth turns to dust and all 32 of your pearly whites have put on their wool socks, you may as well forget trying to swallow even a single pill, let alone a fistful of them -- unless you've had the good sense to bring along your own bottled water! Trust me, everyone around you will envy you. Beyond that, it's good to have bottled water with you anyway, because flying is dehydrating, and people with HIV, especially those taking Crixivan, cannot afford to let themselves get dehydrated.
During my years on Crixivan, I got tired of the taste of all that plain water, so I switched to bottled waters. And when they began to bore me, I switched to bottled waters with flavors (lemon-lime, orange, raspberry). And when, in time, I lost my taste for those flavors, I began to add a splash of juice to the water. I found that really helped!
If your dosing regimen requires that you take some of your meds on an empty stomach, you're in luck -- because if you think the drink service is slow on a sold-out flight, try getting anything to eat before you've been airborne for two-plus hours. But if you need to take some of those meds with food, especially fatty foods that will promote absorption, you're out of luck...unless you bring your own high-fat snacks along. One of the protease inhibitors I'm now taking, Norvir, is supposed to be taken after a high-fat meal -- and since I never know when they'll feed me on a flight, or whether the meal will meet a nutritionist's definition of high-fat, I always travel with some high-fat snacks. I happen to like those little crackers with the peanut butter, but you should bring along whatever appeals to you. I find that M&Ms pack easily and travel well -- and when I travel alone I don't have to share the green ones with anyone.
If you are taking Crixivan rather than Norvir, you need to take your protease inhibitor on an empty stomach rather than a full one. That's easier to do when you're at home than when you're on an airplane, and when your dosing schedule is disrupted by air travel you may find yourself really hungry just when you are supposed to take another round of pills. My recommendation is that you pack some low-fat, low-calorie snacks in your carry-on bag for just those occasions. If you need suggestions, consult the Pull Out and Save section of the October 1997 issue of AIDS Care, "Foods You Can Eat When You Take Crixivan."
So... I'm finally on the plane, with my meds nearby. I've got bottled water to take them with, and I've got appropriate snacks to eat with them. Now I am faced with the higher mathematics of trying to figure out how I am going to stick to my every-eight-hour dosing regimen, eat the right kind of food at the right intervals, and change three time zones twice in two days. I'm not all that good at math, so I've worked out a simple scheme to accommodate changes in time zone. When I travel across the country from west to east, I take each dose one hour earlier than I normally would, so that I stay very close to my eight-hour dosing intervals but I "gain" an hour with each interval. That way, I'm back on my regular dosing schedule in three doses. When I travel cross-country from east to west, I reverse this process -- adding an hour between dosing cycles for three cycles to get back on schedule.
After more than three years on a regimen that included Crixivan, which should be taken every eight hours and on an empty stomach (or with one of the approved snacks mentioned above), I changed to a new regimen that did not impose those particular constraints. However, that new regimen -- which includes the two-protease combination of Norvir and Fortovase, imposes restrictions of its own. It requires that I take these pills with a full meal, preferably a high-fat meal. And as anyone who has ever taken Norvir knows, this protease inhibitor has to be kept refrigerated or it will lose its potency.
Packing high-fat snacks in my carry-on bag solved the first of these problems, but you should have seen me on the first cross-country flight I took after I switched regimens. I sat there with a barf bag full of ice cradled between my feet, trying to keep my medicine cold. This experience motivated me to do a little research on Norvir and refrigeration -- and what I learned, from a fellow advocate who has worked for Abbott Laboratories, is that as long as Norvir is kept out of direct sunlight and cooler than 70 degrees, it can be out of the refrigerator for up to 12 hours.
My solution now is to toss the Norvir into a Zip-Loc with half a tray of ice cubes or one of those blue-gel "artificial ice" bags, the kind you use to keep a beer-cooler cold. This works for me most of the time, but for the times it doesn't -- like when I recently drove across the country -- I find that a wide-mouth thermos with a small bag of ice in the bottom and a tight-fitting top will keep my Norvir cold until I can get to a hotel or motel and transfer it to the refrigerator of the mini-bar.
I left my Norvir behind only once, and the long loop back to retrieve my pills from the mini-fridge in my room taught me a useful lesson. I now travel with a supply of fluorescent Post-Its, and I stick them to my car keys, my room key, the doorknob. They all say the same thing: "Don't forget your Norvir, Dawn!"
I've stuck these reminders up in so many rooms in so many cities that I no longer have to read them. I see the squares of bright color...and I know what they are telling me. They are telling me that I should take all of my meds at the scheduled times -- and that I should take all of my meds with me when I leave.
Traveling with my pills started out as a challenge, but it has become a kind of game for me. I find that I take great pleasure in managing my little army of medications wherever I go. (I sometimes wonder if mine are the best-traveled Norvir bottles in the whole country. They ought to get frequent-flyer miles of their own.) Don't get me wrong -- all this pill-taking is a hassle. But I take my pills so that I can stay healthy and do the things I love to do. Traveling is one of those things. I wouldn't want to do without the traveling, any more than I would want to do without my meds.
Back to the June 1998 AIDS Care contents page.
This article was provided by San Francisco General Hospital. It is a part of the publication AIDS Care.