Hit the Road, Jack (and Jill)

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.

"Always pack your pills in a carry-on bag. 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."

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.

"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. 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."

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.

Travel Tips for People with HIV 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. Print out this page and tuck it into your suitcase, where you'll be certain to come across it whenever you begin packing for a trip. Pack your pills first. It's one thing if you forget your socks, or your shaving kit, or even your address book. You can replace those items when you reach you destination...or you can get along without them. You cannot get along without your medications, not even for a day, so pack them first -- and pack them carefully. You know the routine, because it is merely a variation of what you do once a week, week in and week out, when you count out your pills for the next seven days and transfer them to the appropriate containers. At home you may well use a subdivided seven-day plastic pillbox to hold all your meds, but for travel it's often more convenient to carry your meds in something smaller -- like recycled, relabeled film cans, or sturdy, resealable plastic bags, or even a pocket-sized plastic tackle box. The choice is up to you. The important thing is that you know where each day's medications are -- and when to take them. It's probably wise to take a backup supply of your anti-HIV meds with you, especially if you are traveling across the country or to another country. A two-day backup supply should suffice. With those pills at hand, you won't have to worry if your charter flight is delayed a day or an airline bumps you from an over-sold flight. Pack your pills in a carry-on bag -- and nowhere else. There's no guarantee that your flight will depart on time or arrive on time -- or that checked baggage will be waiting for you at your destination. If you carry your pills on board, you will be prepared for any sort of travel delay. The airline may not be able to keep to its posted schedule, but you will be able to keep to your dosing schedule...and that's the important thing. Never travel without your own supply of food and water. The antiretroviral regimen you are on imposes its own dietary restrictions: certain pills must be taken with water but on an empty stomach, others must be taken following a high-fat meal, and all of them must be taken at specified times. To varying degrees, dehydration affects all passengers on long flights, and people with HIV -- particularly those who are taking Crixivan -- need to be especially careful that they do not allow themselves to get dehydrated. So bring a supply of bottled water, iced tea, or fruit juice onto the plane with you -- and make a point of drinking throughout the flight, not simply when you feel thirsty. You can call ahead and ask the airline to provide you with a special meal -- all major airlines offer customers this option -- but that doesn't mean that the meal will be served when you need to eat, or that it will be anything you want to eat. If you are taking Norvir, you will need to consume a high-fat snack before you take that protease inhibitor. Since there's no way of knowing when you will get fed on an airplane, or whether the meal that is served meets a nutritionist's definition of high-fat, you should travel with a supply of appropriate snacks. If, on the other hand, you are taking Crixivan, a protease inhibitor that should be taken on an empty stomach rather than a full one, you should travel with a supply of low-calorie, low- or no-fat snacks -- because you may find that you are suddenly really hungry just when you are supposed to take another dose of Crixivan. For a list of snacks that meet this definition, see "Foods You Can Eat When You Take Crixivan" in the October 1997 issue of AIDS Care. Adjust your dosing schedule according to the number of time zones you cross. This sounds tricky, but it's actually quite simple. As you travel from west to east, take each successive dose of your anti-HIV meds one hour earlier than you usually do. (Taking your doses an hour earlier, or an hour later, than usual falls well within the approved range for adherence to your assigned dosing regimen.) If you fly from Los Angeles to New York, for example, you cross three time zones -- and after three slightly shorter dosing cycles you will be back on your normal schedule. When you travel from east to west, you reverse this process -- adding an hour between dosing cycles. If you fly to London to Boston, for example, you cross five time zones -- and after five slightly longer dosing cycles you will be back on your normal schedule. (When you travel north-south, there's no need to make any adjustments. Just stick to your regular dosing schedule -- even on an 11-hour flight to Buenos Aires.) Remember that you are not at home. It's easy to stick to your daily schedule of pill-taking when you're at home. You are in your usual place, your pills are in their usual place, and your routine is a familiar one. It's not so easy to remain fully compliant with your anti-HIV regimen when you travel, especially when you travel to an unfamiliar destination. To guard against missing any of your doses, or leaving your medications behind, it helps to travel with fluorescent Post-Its. Stick them on the bathroom mirror, on the dresser top, on your suitcase, on your car keys, on your hotel or motel room key. Those flashes of bright color will remind you to take every dose of every one of your medications every day -- and they will remind you to take your pills with you when you leave.