Chapter 37

Travel

Whether we’re sick or healthy, walking around or confined in a wheelchair, we can choose to wait for death, or we can choose to live until we die. Knowing that death may be in the near future is no reason to give up on life. I love to travel, and the rest of it be damned.

—Lewis L.

 

Section 1. In General

The key to traveling with a life-challenging condition is to anticipate possible complications ahead of time. While the following advice may appear daunting, if you follow it, you should be able to travel and have a good time. In 1991, I traveled literally around the world with a person living with AIDS. We followed the tips you will read about. When a health problem cropped up in Sydney, we were prepared. Travel was not as spontaneous as it could have been, but it was definitely worth it for both of us.

Of course, before embarking on any journey you should consult your doctor regarding whether you should go. If you are in a weakened condition, give serious consideration to traveling with someone, preferably healthier than you are. It will help to have someone you can count on to step in and assist you in the event that something happens, no matter how unlikely that may seem.

Section 2. Choosing Your Destination

In general.

• Match your destination to your physical capabilities.

• Consider whether there will be doctors available trained in treating occurrences associated with your condition. If you include a destination with a high risk of infectious disease or a lack of reasonable access to physicians or medical facilities, be aware of the closest facility and how long it would take to get there in an emergency.

• If you want to head to a warm climate, find out whether any of your drugs would react negatively with the sun. Your eyes may also be more sensitive to sunlight and its damaging effects.

If you’re considering traveling outside North America.

• Does the country prohibit entry to people with your condition?

• Ask your doctor whether the required inoculations, if any, may be harmful to you.

• To ensure that you are aware of the possible threats to your health in a potential destination, ask your doctor, the Centers for Disease Control and Prevention’s International Traveler’s Hotline at 404-332-4559 (www.cdc.gov/travel/travel.html) or call the Public Health Service at 404-639-3311. The Public Health Service provides a person-to-person consultation with a travel adviser.

• If applicable, does the country have resources to adequately screen blood or provide sterile needles? Your local Red Cross office can advise you about safe sources of blood overseas.

Tip. Consider joining the International Association for Medical Assistance to Travelers (IAMAT), which guarantees treatment by English-speaking doctors should the need for medical care arise during your trip. IAMAT operates in 125 countries, and its doctors are trained in the West. IAMAT is at 317 Center Street, Lewiston, NY 14092 (716-754-4883).

Section 3. Making Travel Plans

Making arrangements.

• Rest: Rest will be required. Be sure to include plenty of rest time in your itinerary or your body will force you to rest at what may be an inopportune time.

• Cancellation: When booking any arrangements, check the cancellation policy for the means of travel and the hotel.

• Special requests: If you will need the use of special equipment on your trip, from a wheelchair at the airport to an IV pole or a refrigerator for medications, be sure to make those requests in advance with the travel conveyance and/or the hotels. The same goes for any special dietary needs. The Americans with Disabilities Act prevents public accommodations from discriminating against you because of a disability. It also requires reasonable adjustments on your behalf.

• Syringes and needles: If you are traveling abroad, you should bring a signed letter from your doctor explaining why you are carrying needles and syringes.

• Travel agent: Travel agents can help to alleviate the stress. It doesn’t cost you to use one because they are paid by the airline, hotel, and the like. An agent with a Travel Career Development Diploma issued by the Institute of Certified Travel Agents has completed a course in how to get more information beyond that listed in the airline data banks.

• Train: Information on accessibility of trains and stations and assistance available to passengers who are disabled may be obtained from an authorized travel agent or by calling Amtrak at 800-USA-RAIL. Travelers with disabilities who have a card or a physician’s letter showing disability are allowed a 25 percent discount on round-trip travel by Amtrak with the exception of certain holidays.

• Hotels abroad: Unless you are fluent in the local language, consider staying in a hotel with an English-speaking staff (not necessarily part of a U.S. hotel chain). They are more likely to be able to steer you to medical assistance than the staff at a hotel where no one understands your language. The nonprofit Society for the Advancement of Travel for the Handicapped (SATH) (212-447-SATH) provides information as to whether particular hotels are handicapped accessible as well as other travel tips for people who are physically disabled.

Section 4. Preparing for Your Trip

Once you know where you’re going, it’s time to start preparing for your trip.

• Health issues: One of the most important ways to make sure that you stay healthy on a trip is to leave home healthy. A pretrip medical checkup is always a good idea. If you’re going abroad, schedule your visit to the doctor at least eight weeks before your departure in case of negative reactions or the need for several visits.

• Obtain a summary of your medical records: Carry this in your wallet or with your passport. The summary should include an update on your condition, medications being taken, allergies, list of drugs that cause adverse reactions, and your blood type. Also take a copy of your eyeglass prescription.

• Time zones: If you are going to cross time zones, ask your doctor about how to adjust your medication schedule and write it out in advance so you won’t have to figure it out on your trip.

• Possible symptoms: Discuss symptoms that you might experience while away and be prepared with the appropriate medication as well as early warning signs about your condition that indicate you should seek help.

• Doctors: Ask your doctor for a list of doctors specializing in your condition as well as hospitals and facilities you can use on your trip should the need arise. It would be helpful if he would write a letter of introduction (even if it is addressed “To whom it may concern” or “Dear doctor”) to help you get the services you might need.

• Health insurance: Check your coverage carefully to determine whether you are going to be covered in the places you will visit and to be aware of what you must do to be reimbursed. If your coverage is through a managed care organization, consult the carrier before your departure on the required procedures in the event of an emergency or illness during your trip. With Medicare and Medicaid, there is no coverage outside the United States, except in limited circumstances near the U.S. borders.

Tip: Medical evacuation can be critical, especially when you are traveling abroad. If your health policy doesn’t cover this risk, consider obtaining the coverage through a trip-cancellation policy—provided it doesn’t exclude preexisting conditions.

• Advance directives: Check your living will and health care proxy to be sure they are up-to-date. While these documents may not be binding in another state or country, they can be helpful.

Tip. Carry these documents with you on lengthy trips. Include contact telephone numbers. Let your traveling companion or tour guide know where they are packed. If you don’t want to carry these documents, be sure your traveling companion or, if you are traveling alone, the hotel knows the contact information for your decision maker(s). Also consider filing your advance directives with an entity from which they can be retrieved no matter where you are, such as DocuDial (see chapter 32, section 9).

• Travel insurance: Travel insurance (which is generally purchased through a travel agent) covers cancellation or interruption of your trip, emergency medical care while you’re traveling, lost or stolen baggage, and other similar problems. The following discussion examines the risks to consider as well as alternative means to cover them.

• Health coverage: If your health insurance doesn’t cover where you will be traveling, or if it doesn’t cover medical evacuation, you should definitely obtain travel insurance.

• Trip cancellation or interruption: Look at the fine print of the travel arrangements. For example, your plane ticket, which is often the biggest cost of the trip, may be refundable in the event of cancellation for health reasons—or permit you to use the credit for a future plane trip. If you can’t cancel, consider purchasing a travel policy with cancellation coverage.

• Travel accident: Many major credit cards include travel accident insurance when you use them to buy airline, rail, boat, or bus tickets.

• Your belongings: Your homeowners policy probably covers your luggage.

• Bankruptcy of tour operator: United States Tour Operators Association (USTOA) guarantees travelers against bankruptcy of its members. Several states protect travelers against insolvency of travel agents. Cruise lines leaving U.S. ports are also covered. If you pay by credit card and the tour operator goes bankrupt, you may be able to stop payment through the credit card company.

Tip. If you desire travel insurance, only purchase a policy that has no preexisting-condition exclusion. If your travel agent doesn’t have such a policy, call Travel Guard International (800-826-1300), which will waive the exclusion if the policy is purchased within six days after making your initial deposit for the trip. If all else fails, call a travel agency that works with many people with a life-challenging condition.

Section 5. Packing for Your Trip

In general.

• Always have your doctor’s name, telephone number, and fax number in your wallet, clearly marked.

• If you use any medical equipment such as a wheelchair, take spare parts.

Medications. Assume that you won’t be able to get anything you may need for your health at your destination or while traveling to and from there. Take all of the necessary medication for the time you expect to be away plus a few extra days in case some unforeseen problem develops. To avoid confusion, medications should be kept in their original labeled containers and not mixed together in one vial. This is particularly important for customs agents if you cross international borders.

Tip. If you don’t want to carry all your medication, consider sending some ahead to your destination(s) by traceable overnight mail and advising the hotel how to store them until your arrival. Confirm their receipt before you leave.

Pack in your carry-on luggage

• at least a few days’ supply of medications.

• medications for diarrhea, which can be set off by a change in eating habits or the tap water (even in the United States).

• pain relievers.

• a thermometer.

• unmedicated petroleum jelly and decongestant nasal sprays, which are helpful for long plane rides (see section 6 below).

• your favorite cold remedy.

• sleep aids if you are changing time zones.

• any medications for conditions that are quiet at the moment, in case they flare up.

• high-potency sunscreen, sunglasses, and a hat if you are going to be in the sun, particularly if your medications make you more sensitive.

• a phrase book in the language at your destination if you’re not sure about your fluency. The book should include medical phrases so that in an emergency you can accurately describe symptoms to a non-English-speaking doctor.

• if your immune system is compromised, commercial iodine or chlorine tablets and/or a small immersion heater with an international converter or adapter to boil water to make tap water drinkable in an emergency.

• insect repellent, long sleeves, and high-potency cortisone creams if you are traveling in an area with insects.

Section 6. Planes and Trains

If you have a compromised immune system. Plan your trip to avoid crowds and poor air circulation. Consider:

• Travel at nonpeak hours.

• Try to avoid crowded waiting rooms. Sit in more remote areas of the terminal, away from the congestion, or join your favorite airline’s passengers’ club where they have a private lounge. Amtrak also has private lounges.

• Pack surgical masks for high-traffic areas. Although it is somewhat unusual in our country, in other countries such as Japan people concerned about airborne diseases commonly wear surgical masks.

When flying:

• Travel directly when possible.

• Book a seat in the front. Most planes circulate air from the front to the back. Air in the front should be fresher, and you won’t have to walk past as many other passengers.

• If your seats are preassigned, boarding the plane last will also delay your exposure to a crowded space until the last possible minute.

• Let the airline know as far ahead as possible about your needs.

Tip. Passengers with disabilities have priority on shipping assistive devices or on taking them into the cabin. These rights are described in “New Horizons for the Air Traveler with a Disability,” available free from the U.S. Department of Transportation at 719-948-3334.

Reducing health risks while on board a plane.

• Avoid dehydration by drinking lots of fluids (four to five ounces every couple of hours). Avoid alcohol and drinks that contain caffeine since these will further dehydrate you.

• Bottled water, ginger ale, Sprite, or canned fruit juices are the best liquids to drink since un-distilled water may contain potentially harmful bacteria. Always wipe the outside of the can or bottle before you drink or pour.

• Avoid ice that may have been made from tap water.

• On long flights, to help repel cold and flu viruses, keep the mucous membranes moist by dabbing unmedicated petroleum jelly in each nostril. Nasal decongestants and nasal saline sprays are also good remedies for counteracting the discomfort of abrupt pressure changes and dry flight air.

• Avoid sitting next to anyone with a cold or cough.

• Airline pillows are freshened once a day at most, which means that several other people may have used the pillow before you get it. Bring your own covering for the airline pillow or bring your own inflatable pillow.

• Particularly when traveling internationally, your efforts to avoid stomach problems should begin on the plane. Avoid eating fresh fruit and vegetable salads. Seafood should also be avoided as well as undercooked eggs and meats. Ask for extra bread and cheese packets if necessary. Consider packing your own food in a thermal box if you know your system is sensitive. Also keep in mind that University of Texas studies show that Pepto-Bismol taken “just in case” during trips may be an effective protection against diarrhea.

Section 7. At Your Destination

Medications. Keep to your medication schedule. If you’ve crossed time zones, adjust your schedule to the one you discussed with your physician.

Food. Infections that can cause traveler’s diarrhea can cause much greater harm if you have a weakened immune system. When it comes to food in areas with less than sanitary conditions, a good rule of thumb is boil it, cook it, peel it, or forget it.

Tip. Due to the possibility of an incapacitating emergency, carry with you at all times ID and the name, address, and phone number of where you are staying.

Section 8. Water

If you have a compromised immune system. As a general rule, while traveling (even within the United States) avoid ingesting tap water or using ice in drinks. Alcoholic beverages will not kill the disease-causing organisms in tap-water ice.

• Drink only from bottles or cans and wipe the lip before you drink or pour.

• Use bottled water when brushing teeth, and make sure water does not enter your mouth when taking showers. Do not put contact lenses or teeth in anything but distilled water.

• Bottled carbonated water is safe, but noncarbonated bottled water is safe only if the original seal is intact, and sometimes not even then.

• If you plan to swim, be aware of pollution problems. The safest bet is a properly chlorinated pool.

Section 9. If You Become Ill While Away

• Physicians: If your doctor didn’t give you a recommendation, ask the manager of the hotel whom he would use. If you are overseas and require a doctor’s attention, ask for a “western-style” doctor and hospital to receive the kind of care with which you will be most familiar. You can locate one through the U.S. embassy or consulate, the airline, or English-speaking employees of multinational corporations in the area.

• Hospitals: If you require hospitalization, hospitals associated with a university usually have English-speaking doctors as well as qualified specialists.

• Drugs: All drugs throughout the United States are the same. If you travel abroad, obtain the generic or trade name of all drugs you receive for your home doctor or in case you develop an allergic reaction. Many drugs have a different name outside the United States.

• Sterilization: If injections are required, make sure the syringes come straight from a sterilized package or have been sterilized prior to use. When in doubt, ask to see how the equipment is sterilized (this is where a traveling companion might step in and be of help). If necessary, buy your own sterile needles and syringes.

• Blood transfusion: If you are injured, postpone any blood transfusion unless it is absolutely necessary. According to the Centers for Disease Control and Prevention, a possible alternative to consider before a transfusion is plasma expanders. If you do need blood and you are outside the United States, try to ensure that it is properly screened, or better still, get one of your blood-compatible traveling companions to donate it for you.

• Payment for health needs: Most foreign doctors, hospitals, or clinics require payment in cash unless you have a direct-payment travel policy. In a major crisis seek help first and then worry about payment. Your health is more important than whether your carrier or plan will pay. If you must call an MCO for approval and advice about treatment (MCOs usually have health care professionals available twenty-four hours a day), call home and ask someone there to make the time-consuming calls for you. You may also ask the airline you are using to make the calls for you as a special service.

• On leaving a hospital: Be sure to get copies of all bills and if possible a copy of your chart, as well as letters from attending physicians explaining why you needed treatment. If you can’t obtain these documents, ask that they be mailed to you at the earliest opportunity so you will have all the documentation you need for reimbursement and for your medical file at home. Get telephone and fax numbers, and a contact name, to follow up if necessary.