For millions of Americans, summer means packing up the car or heading to the airport for a long-awaited summer vacation. Whether you’ll be traveling by plane, train, or automobile, we have travel tips and tricks for you. Read on below to find great travel advice specifically for Alphas taken directly from our own Big Fat Reference Guide to Alpha-1. 

Travel Topics Covered: 

  • Travel while on Augmentation Therapy
  • Travel while on Oxygen Therapy
    • Arranging for Oxygen Therapy at Your Hotel
  • Airplane Travel with Lung Disease
    • Air Travel with a Portable Oxygen Concentrator
    • Connecting Flights
    • Other Concerns About Air Travel
  • Train Travel
  • Car Travel
  • Cruise Travel

Travel Considerations for Alphas on Augmentation Therapy  

Traveling for Alphas on augmentation therapy is possible with good planning and organization. Discussion of your travel plans with your physician, home care provider, or infusion facility should be undertaken well in advance of your planned travel. Plenty of lead time needs to be allotted so you can locate approved providers at your travel destination and can confirm your insurance coverage.

Your AlphaNet Coordinator can be instrumental in assisting with the initiation of infusion arrangements. Furthermore, your augmentation therapy provider or specialty pharmacy can assist with the specifics of insurance coverage and locating providers.

If your travel plans take you out of state or to another country, identifying a physician who will be responsible for your care and who will be able to treat you, if necessary, must be established. This requires communication between your physician and the accepting physician. You may need to facilitate access to copies of your medical records, including your medical history, allergy status, and a list of your current medications. The accepting physician will need all of the specific information with regards to your current augmentation therapy. If you are a Medicare participant, you will need to arrange to receive your drugs at your destination as you are not allowed to take them with you while traveling.

Unlike prescription medications in pill form, many states require prescriptions for augmentation therapy to be written only by healthcare providers licensed in their state. To avoid a disruption in treatment, always plan ahead, especially when establishing care with a new physician. Many providers are booked months in advance, especially for new patient appointments.

The other component involved with arranging infusions while you are away from home is finding an infusion provider, whether it is a home care agency, a clinic or other type of facility. In some cases, you may be able to locate a provider, but they may not necessarily have experience with augmentation therapy. If this is the case, you will want to ensure they receive infusion instructions and other educational materials well in advance of your arrival.

If circumstances arise and adequate resources cannot be located or established, other options are possible depending on the traveler’s infusion schedule. Any alternative infusion schedules or an omission of an infusion should be discussed and agreed upon by the prescribing physician.

Requiring augmentation therapy for Alpha-1 does not need to be a deterrent to traveling and leading a healthy and fulfilling lifestyle. Just as with planning for routine infusions at home, emergency and contingency planning is essential when planning for infusions when away from home. Good planning and preparation will go a long way to assuring a safe and trouble-free experience.

Travel Considerations for Alphas on Oxygen Therapy

Discuss your travel plans with your home oxygen provider and enlist their help in making arrangements for your therapy as you travel. National chains usually can assist you by contacting their other offices to make these arrangements. Many local dealers belong to a network of oxygen providers and also can assist with your arrangements for oxygen. Keep in mind that if you require continuous therapy, and if you are traveling by plane, arrangements will need to be made for you to carry an approved portable oxygen concentrator (POC) with enough batteries for your entire trip including oxygen while at the airport, on your flight(s) as well as for the time on the ground between connecting flights. Sometimes a portable oxygen concentrator will meet your needs for supplemental oxygen for the entire trip, but sometimes you will need continuous flow oxygen for sleeping or with exertion that cannot be supplied by the specific POC you will be using.

As you make your travel plans with your oxygen provider, make sure you discuss and agree upon all the details of your plans so that you can be assured your oxygen needs will be met before, during, and after you complete your travels. It is best to provide all of the specific details in writing to a designated contact person. If you require oxygen while in flight, you must contact the airline for the specific form you will need your doctor to complete. Keep a record of the name of the individual or individuals you speak with. You may have enough lead time to mail your information and requests to the oxygen providers; however, faxing or emailing may be more efficient. The information you will need to provide includes:

  • Your name, address, and phone number
  • Your doctor’s name and phone number
  • Your oxygen prescription that lists your flow rate, the type of system, and equipment needed. Include specifics on your tubing, cannulas, humidifier, or nebulizer
  • Departing airport or port and city
  • Airline and flight number, departure gate number, any stops or layovers, arrival airport, and arrival gate
  • Address, phone number, and name of a contact person at your final destination
  • Name and number of an emergency contact.

Keep the names and phone numbers of your emergency contacts, including your home oxygen provider and provisional oxygen provider, where they can be retrieved readily if needed.

Be sure to obtain confirmation of all arrangements both verbally and in writing. Review the specifics of each segment, question any discrepancies, and make the necessary adjustments. Have a good overall understanding of what arrangements are in force and what is to be expected. The preparations needed for traveling with oxygen can be somewhat tedious, but the more you are able to anticipate and plan for your oxygen needs prior to your departure, the more freedom you will have to enjoy yourself while traveling.

Gathering as much information as possible on traveling with oxygen will also prepare you to meet many of the challenges that may arise. If the thought of making your own arrangements is daunting and overwhelming, there are companies that specialize in assisting individuals who require supplemental oxygen while they travel. The Internet can be a valuable tool in locating providers as well as finding helpful tips for you to consider before you travel.

Arranging for Oxygen Therapy at Your Hotel

When making arrangements for supplemental oxygen at a hotel, be sure to get the name of the manager or the concierge to make them aware of any special requests/needs prior to your arrival. They should be made aware that your oxygen supply might arrive before you do. You will need to check with the oxygen supplier to see if your designee at the hotel can sign for your delivery of oxygen, or if you must do so in advance. If the supplier will not deliver the oxygen to the hotel without your signature acknowledging its receipt, arrange to have a delivery ticket faxed or emailed to you so you can sign it and email or fax it back. Be sure to find out where the hotel will store your oxygen and related supplies if it arrives before your scheduled check-in time. If you have preferences as to where you want your oxygen supply set up in your room, make your wishes known to both the supplier and the hotel staff ahead of time.

If you are renting a room or home through Airbnb or another online vacation rental platform, follow the same procedures as outlined above, but make sure to always communicate with your host directly through the respective rental application or website.

Airplane Travel with Alpha-1 Lung Disease

There are special considerations individuals with Alpha-1 lung disease need to bear in mind when flying on an airplane. Commercial airline cabins are not pressurized to the atmosphere at sea level, but to a much higher altitude of up to 8,000 feet. What this means is that there is a lower concentration of oxygen in the ambient air during the flight. This is generally not a problem for individuals who do not have lung disease. For people with compromised lung function, however, the lower concentration of oxygen in the plane can put them at risk for developing hypoxemia.

If you require supplemental oxygen only during exercise or sleep, you may find you might require it for air travel and when at a high elevation. Your physician should be able to determine whether or not you will need to make any special arrangements for oxygen during your travels. You should consult with your healthcare provider well in advance of your planned departure so that, if necessary, you will have sufficient time to obtain a portable oxygen concentrator.

Topics to discuss with your physician:

  • The effect of being in a pressurized cabin on your supplemental oxygen requirements
  • Whether your oxygen needs have changed since your last prescription (rate of flow)
  • If you already have a portable oxygen concentrator (POC), whether that POC will meet your needs during the flight
  • If you do not currently have a POC, discuss what the doctor recommends for a POC you rent or buy

There is a common misconception that the oxygen in the overhead compartment of an airplane can be used if oxygen is required during the flight. This is not so. This oxygen is not used for supplementing the needs of passengers requiring oxygen therapy; rather, it is for emergency use on the aircraft if cabin pressure is lost.

Furthermore, in-flight oxygen requirements prohibit individuals from using their own oxygen equipment on the plane with the exception of FAA-approved POCs. Liquid oxygen or compressed oxygen cannot be used or carried in flight.

Since there are many FAA-approved POCs, many airline companies no longer have oxygen available for in-flight use as they did in the past. Additionally, some airlines still do not allow POCs on board and some charge a fee, even though the POC is not provided by the airline. Some only allow the smaller POCs due to limited space onboard. Most airlines require that you carry extra batteries in addition to what you will need to power the POC for the flight(s) and any connection time.

If the airline does provide supplemental oxygen, they may require two weeks’ advance notice to guarantee oxygen arrangements. Some airlines can make these arrangements with as little as 48 hours advance notice. It is advisable to make the arrangements as far in advance as possible and to reconfirm your arrangements as the travel date draws closer.

The cost of oxygen varies from airline to airline, and some specifically smaller commuter airplanes and most U.S.-based airline companies do not provide the service at all. The cost of this service generally ranges from $75 to $150 per flight segment.

If you do find an airline that still provides supplemental oxygen, be aware the airline will provide oxygen cylinders and supplies for you to use during the in-flight time only. They will not supply oxygen for you to use while you are transferring between flights, or while you are going to ground transportation or the baggage claim areas. If you require supplemental oxygen during these times, you will want to make arrangements with a service provider for your oxygen needs during each segment of your trip. Your local oxygen supplier may be able to help you arrange this.

Air Travel with a Portable Oxygen Concentrator

The Federal Aviation Administration has approved the use of many portable oxygen concentrators (POCs) for in-flight use. Not all airlines permit their use, some airlines limit their use to certain types of aircraft, others prohibit their use on commuter planes and still, others restrict their use to a particular type of POC. It is important, therefore, to check with the airline prior to making your travel plans to discuss their particular policy regarding the use of POCs. You must always notify the airline in advance if you are planning to fly with your POC. You should plan on requesting a window seat, as many airlines do not permit POCs to be used where they might restrict another passenger’s exit in case of an emergency.

Prior to flying with a POC, you must obtain a signed statement from your physician and it must be available during each flight on your trip. Each airline has a different form they require, so be sure to check with the airline in advance of your departure to obtain their form. Once completed, remember to make numerous copies.

This statement typically includes:

  • Your ability to respond appropriately to alarms
  • When oxygen use is necessary (all or a portion of the trip)
  • Maximum flow rate under normal operating conditions

Be sure to get to the airport early as security will do a thorough check of your concentrator. Plan to bring enough fully charged batteries with you to power your POC for the duration of the flight plus extra batteries for unanticipated delays and to meet airline requirements. Airlines may require you to bring enough batteries to power the device for at least 150% of the expected maximum flight duration. Although you may be able to access an electrical outlet on-board the aircraft, there is no way to guarantee this. An adequate supply of batteries is the safest option. To conserve battery life, you may consider plugging into an electrical source while you are waiting in the airport for your flight.

If you consider using an in-flight AC power connection, be sure to check with the POCs manufacturer in advance of flying to know if you will need to remove the batteries prior to plugging into an aircraft outlet. Also, check that your AC power adapter is the appropriate type for the electrical outlet on the aircraft. During takeoff and touchdown, you can store your concentrator under the seat in front of you.

It is not necessary to turn the POC off during takeoff and landing. If planning a trip overseas, it is essential that you check with the airline regarding traveling with your POC. Many airlines will not permit their use on overseas flights. Additionally, because of the differences in electrical current, your POC may overheat and shut down even if using an appropriate adapter. For example, the United States uses 110 Volts with 60 Hz and Europe uses 220 Volts with 50 Hz. Be sure to discuss this issue and other issues associated with overseas travel with your POCs manufacturer or supplier prior to use outside the US.

Connecting flights

If your travel plans require you to take a connecting flight, consider requesting a wheelchair with an attendant to help get you to the next leg of your trip. Riding instead of walking will conserve your energy and reduce the stress of navigating your way through the airport. Some larger airports have motorized carts to shuttle you from gate to gate. Do not leave it to chance that one will be available when you need it — call the airport ahead of time and make arrangements to have transport either by an attendant with a wheelchair or motorized cart ready and waiting at the gate when you arrive. For some airlines, their website allows you to request wheelchair assistance online.

It is a good idea, whenever possible, to travel with a companion who knows what your needs are and who can assist you. A travel companion should be familiar with the oxygen system you use so they can offer any technical assistance you might need and help you change batteries and silence alarms on a portable oxygen concentrator while in flight. The companion should also know how to change cylinders, open tanks, attach a new regulator and adjust the flow. It is advisable to bring extra tubing, cannulas, adaptive pieces, tank wrench, T-connectors, swivels, and electric adapters so that you are prepared for any potential situations. Keep all necessary items in your carry-on luggage so they are available to you and there is less risk of them getting lost.

Despite your advanced preparations, you may still experience some unexpected disruptions in your plans. Do not be discouraged if your instructions are not adhered to 100 percent of the time. Learn from these experiences and make the necessary adjustments in your plans for the next time you travel.

Other Concerns About Air Travel

Another consideration with airline travel is the air quality in the cabin. Cabin air is relatively dry, which can predispose Alphas to an increased risk of acquiring an upper respiratory infection. Also, the close seating arrangements can pose a risk for contracting a respiratory infection for susceptible individuals.

There are some simple precautions to take to help reduce your risks when flying:

  • Drink plenty of water to stay well-hydrated
  • Avoid coffee, tea, and alcohol, as they tend to cause dehydration
  • Ask to be reseated if you are near someone who is coughing, sneezing or appears to have a cold
  • Wear an N-95 mask as a protective barrier to help reduce your exposure to airborne droplets
  • As a contingency, have a filled prescription for antibiotics to use should you develop an infection while you are away from home

Car Travel

Travel by automobile requires conscientious planning to assure a safe and successful trip. As with other modes of travel, discuss your travel plans with your physician and your home oxygen supplier. Remember that altitude can be a factor when traveling by car, so be sure to discuss this with your healthcare provider and plan accordingly. Map out your travel route and identify planned stops along the way where tanks can be refilled, or help will be available if necessary. The American Automobile Association (AAA) can assist you with mapping out your travel route.

Be aware that highway pollution can be bothersome when traveling by car, so you may want to try to avoid driving during peak rush hour times. Travel during periods when there is lighter traffic and avoid heavily traveled highways. Take the scenic back roads if possible. During the summer months, keep the air conditioning on and the windows rolled up.

Remember that allergens can pose some challenges as well. If you are traveling to an area where there are known allergens that you are sensitive to, consider taking your trip when these do not pose as much of a problem. You should keep prescribed medications readily available and in adequate supply.

If you require supplemental oxygen, plan to have an adequate number of oxygen cylinders or tanks available for the duration of your travel. If you use a concentrator powered by the car’s electrical system, be sure to have the system checked prior to leaving to make sure the alternator and battery can handle the extra demand.

Common sense and good preparations can go a long way in preventing a crisis on the road when traveling with oxygen by car. Make sure the car is road-worthy and has been serviced recently. Have the oil changed and ensure all fluids are filled. Be sure the spare tire is inflated, and that the jack, jumper cables, flares, and emergency supplies such as blankets and water are available.

If you are traveling with extra oxygen, secure cylinders or the concentrator so they are not banging around during the trip. Jolting and banging of the cylinders can cause the gas to escape, inadvertently emptying them. Keep liquid oxygen reservoirs upright to prevent spillage and potential skin burns. Keep the area where the cylinders are stored well-ventilated and keep them from extreme heat. Be sure not to leave oxygen tanks in hot cars during the summer as escaping oxygen can create a hazard.

Train Travel 

Train travel is a very accessible and comfortable alternative to air travel. It requires most, if not all, of the same type of advanced planning with regard to meeting your oxygen therapy needs. As with air travel, discuss your travel plans with your healthcare provider and home oxygen provider to establish your needs for your length of stay.

The following paragraphs apply to AMTRAK. If you are traveling on a locally owned railroad, check with them directly. Alaska also runs the Alaska Railroad, a state-owned railroad, and its rules are different from AMTRAK’s.

To book a trip on AMTRAK, always make your train reservations by calling 1-800-USA-RAIL. Online reservations cannot be made on Amtrak.com when traveling with oxygen equipment. Although a prescription or physician’s letter is not required, it is still a good idea to have copies with you, as well as a brief medical history and a current medication list.

Unlike air travel, the use of your own oxygen equipment is allowed on the train, but they must meet the following requirements:

  • Power Source: Oxygen equipment, including oxygen concentrators, must be able to operate a minimum of four hours without available onboard electrical power (in the event of a power disruption onboard).
  • Oxygen equipment must be Underwriter’s Laboratory (UL) or Factory Mutual (FM) listed.
  • Weight Limits: The total weight of all tanks may not exceed 120 lbs (54 kg). Within this limit, we allow:
  • No more than 2 tanks, 50 lbs (22.7 kg) each, or
  • No more than 6 tanks, 20 lbs (9 kg) each

There are no extra charges for travel using your own oxygen equipment on the train.

The same planning principles apply with train travel as with air travel. Make sure you have extra equipment readily available, along with emergency phone numbers and your oxygen provider’s phone number. Arrangements should have been made ahead of time with a local oxygen provider if you will be requiring additional supplemental oxygen at your final destination.

Cruise Travel

Travel by cruise liner is yet another travel option, and most cruise lines accept passengers with supplemental oxygen. Cruise liners generally require a four- to six-week advance notice of your need for supplemental oxygen, as approval must be obtained from the Special Services Department or the Operations Department of the cruise line prior to your departure. A physician’s letter that includes approval for travel, a brief medical history, and a current prescription for all medical therapies, including oxygen, will be required as well.

Passengers are usually required to make their own oxygen arrangements with suppliers and have equipment delivered directly to the cruise ship. Liquid oxygen systems are generally preferred, but each cruise line has its own requirements, so you would be well-advised to discuss all of these details with the cruise liner’s agents prior to your planned departure. Generally, there is no additional charge for onboard oxygen provided by the passenger themselves, and the only restrictions are to avoid smoking areas.

Depending on the length of your cruise, you may also need to make arrangements for augmentation therapy while onboard. Contact your AlphaNet Coordinator, your physician, or your specialty pharmacy for assistance if you are planning a cruise that interferes with your infusion schedule.

Sources: 
https://bfrg.alphanet.org/s/article/6-13-1-introduction
https://bfrg.alphanet.org/s/article/6-13-2-traveling-with-oxygen
https://bfrg.alphanet.org/s/article/6-13-7-travel-with-augmentation-therapy
https://bfrg.alphanet.org/s/article/6-13-3-air-travel
https://bfrg.alphanet.org/s/article/6-13-6-automobile-travel
https://bfrg.alphanet.org/s/article/6-13-5-cruise-travel
https://bfrg.alphanet.org/s/article/6-13-4-train-travel