What If…? Preparing Patients with Limb Loss for Travel

Confucius said, "Wherever you go, go with all your heart." I say, wherever you go, go with an open mind, a willingness to laugh, and an extra pair of shoes-and for those of us living with limb loss, extra prosthetic accoutrements. I am an experienced world traveler and attribute my wanderlust to having been an exchange student in Norway when I was 16 years old. I have had the great fortune of traveling domestically and internationally-with the added bonus of being a globetrotter with limb loss. From Times Square to Tiananmen Square, my travels have led me on countless on- and off-the-beaten-path adventures in cities too numerous to recall. As much as I love the spirit of adventure, or rather the relief of successfully completing an adventure, I'll be the first to admit that my limb loss sometimes creates challenges when I travel. But with thoughtful planning and pre-trip consultative insight from prosthetists, travel with limb loss can be done with ease, comfort, and safety. I have learned that preparation is the key to a successful trip, whether in the United States or abroad. For example, I never leave home without my prosthetic emergency kit, which includes duct tape, electrical adaptors, extra charging cables, adhesive-backed moleskin, Silipos pads, spare prosthetic socks, and triple antibiotic ointment. Posing as a soon-to-travel patient, I presented some hypothetical situations to John Angelico, CPO, with Scheck & Siress, headquartered in Oakbrook Terrace, Illinois, and Danny Freund CP, LP, with Princeton Prosthetics, New Jersey, to seek advice about ways to help make travel worry-free for patients with limb loss. I am getting out of Minnesota for the winter and will be spending a few months in Scottsdale, Arizona. Because I know that I may need a prosthetist to modify the settings on my microprocessor-controlled knee (MPK), how do I find someone reputable and trustworthy? Angelico says, "The ABC [American Board for Certification in Orthotics, Prosthetics and Pedorthics] or BOC [Board of Certification/Accreditation] websites are the best options for locating a certified practitioner. I always look myself to see if there are any names that I feel confident in referring." Freund recommends checking the manufacturer's website for someone certified in the type of component you wear. I wear a C-Leg, so in my case it means checking Ottobock's website. In addition to locating a prosthetist through the manufacturer's and certifying organizations' websites, he suggests I visit the Amputee Coalition website "to find a list of local amputee support groups in the Scottsdale area. Local amputees are usually the best source of information on who is good." Since you know my prosthetic needs best, would you be available, if necessary, to have a telephone consultation with the practitioner I choose to see? According to Freund, "Communication is key. Many prosthetists are afraid to make any changes on a prosthesis that they haven't made themselves. As long as the prosthetist is someone who is reputable...I have no problem with the prosthetist in Arizona making whatever adjustments may be necessary to make my patient comfortable." He continues, "I would also leave the door open with my patients to know that if they have any questions or concerns that I am still here via phone...." Angelico says, "Absolutely! I provide my cell number to almost all of the people I work with." I am going to drive from Minnesota to Arizona. How will I recharge my MPK in the car or en route? Can I charge it at rest stop? A restaurant? What do you suggest? Both Angelico and Freund advise getting a car charger. Freund adds, "Remember, a 15-minute charge will last for roughly four hours. So if you are stopping for a meal, you can always try to plug it in if you don't want to buy a car charger. But it's always a good idea to have a car charging option as a backup in the event of a prolonged power outage." My plans have changed, and I am nixing the idea of going to Scottsdale. Instead, I am going to the south of France. How do I find a prosthetist when I am abroad? Just as he recommends checking with ABC and BOC, Angelico recommends contacting "ISPO [International Society for Prosthetics and Orthotics], which is the international organization for O&P. I would contact Ottobock to see if it knows of qualified practitioners in the area in which you will be staying." "The C-Leg comes with a worldwide warranty, so if there is ever a problem in another country, I would talk with Ottobock to find a list of C-Leg-certified practitioners in France. Since Ottobock is such a large company with a worldwide presence, there are no issues with service or replacement products. But I would make sure that my patients have enough of their 'emergency kit' supplies, such as those you carry," adds Freund. What things do I need to think about when flying for so long? "Some things you'll need to consider are whether your shoes are comfortable or whether you need to bring a pair of slip-ons to wear during the flight," Freund says. "You may also need to bring an extra cushion to sit on to change your positions during the flight. Also, think about whether you need to bring cleaning supplies to wash your residual limb and/or socket during the flight." Should I remove my prosthesis during the flight? "Limb swelling with the altitude is a concern," Angelico says. "The type of prosthesis you wear will determine if there are options to minimize the swelling that might occur. It's probably not a good idea to remove the prosthesis during the flight because this will only encourage swelling. This will make donning the prosthesis difficult." How will I keep the battery fully charged? "The newer knees hold the charge easily up to three days, and sometimes longer. You shouldn't have an issue for your transatlantic flight, but remember to bring the adaptors provided with your C-Leg to use in Europe," Angelico says. "Charge it the night before [you leave]. The C-Leg [battery] lasts up to 45 hours, but always bring the charger with you. Don't ever pack it with your luggage," Freund cautions, "because if your luggage gets lost or delayed, then you may have a problem. Even if a prosthetist in France can get you a charger, that may take some time, so it's easier to keep it with you." I don't know if prosthetists in France will have some of the prosthetic supplies that I may need. How do I plan ahead? For example, I use AmpuTalc. Is there something comparable that I could find at a European apothecary or grocery? Will cornstarch work? "Every person's skin is different. The last thing you want is to ruin your vacation because you are trying something new...," Freund says. "You might want to try baby powder at home, for example, something like Johnson and Johnson® that you know may be available in foreign countries given its worldwide presence. Do your test before you travel to see how your skin reacts." Angelico suggests that you pack what you think you'll need in your checked baggage and try to make contact with the practitioner at your destination to find out if products you use or their equivalents will be available locally should you need them. I know that I am not supposed to get my microprocessor-controlled device wet. What happens if I should happen to get a little too close to the water's edge and it does get wet? You should bring a cast protector bag if there is a chance you might be close to the water," Angelico says. "If it does get wet, try to dry it immediately with a towel and then a hair dryer." Freund adds, "I would ask you to call [your prosthetist] if something like this happens. It may be an expensive phone call, but that would be inexpensive compared to potential charges if it is not covered under warranty." Should I bring a wheelchair, crutches, or a cane when I travel, even though I don't ordinarily use them? Both Angelico and Freund suggest retractable crutches, which offer an additional advantage of collapsing easily to fit into luggage. Freund mentions that they are always a good backup plan. "They don't take up too much space and leave the option in case you need them. It's always good to plan for the unexpected, because you never know what can happen when you are abroad. You might use those crutches to help you ambulate to the bath or shower." What do I say when I am going through customs? "Let them know immediately about wearing your prosthesis. Every airport is different and will handle your situation differently," Angelico says. Can you write a letter that states I wear a prosthetic limb? Will it help? Freund says, "Yes, I will provide you with a letter, but I am not sure to what extent it will help. The TSA [Transportation Security Administration] is a U.S. organization, so the rules that apply in the United States may not apply in foreign countries. A general rule of thumb is to be respectful to whoever is trying to do their job of security...." Angelico mentions that you may want to have a letter from your physician in addition to one from your prosthetist. What other advice can you give me? Freund responds, "What time of year will you be going? What is the weather like there during that time of year? If you know that your [residual] limb tends to swell or shrink in certain temperature conditions...have you brought enough socks or other supplies to accommodate those anticipated changes? For whichever countries you are going to, be sure to check the voltage and configuration of the electrical outlets. You don't want to be surprised when you arrive in a new country and don't have the appropriate converter or adaptor to charge your C-Leg." Freund continues, asking if I plan to rent a car. "If yes, will the car be adapted with the appropriate modifications, such as a left gas pedal if applicable? "If you have and normally use a parking placard that allows you to park in handicapped parking (HP)-designated spaces, bring it. Most places-not all-will allow you to park in their HP spaces. Some places, like New York City, have special regulations that do not allow people to park in designated HP spaces even with your home state-issued HP placard. Check the rules before you park." Along with the prosthetists' advice for a successful journey, here are my top five travel tips: Pack those things that you cannot easily purchase. I use an MPK that needs a special cable to charge the battery. It came with the knee and isn't something I could buy at a hardware store or pharmacy. Because I have been stuck in a hotel room with lost luggage and a dead battery, I now carry the cable in my carry-on bag. This way, I will be able to charge the battery and use my leg so I can get to the store to buy the other things I need, in case my luggage goes missing again. Plan extra time when going through security. For those of you traveling by airplane, TSA has checkpoints at all U.S. airports. Be prepared with what to expect by reading TSA's website at www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions . Because of security reasons, each airport has different screening procedures for people who wear prosthetic limbs, and its website will not disclose what it does or does not do. But you can call TSA toll free at 855.787.2227 to ask TSA Cares staff questions about screening, policies, and what to expect at security checkpoints. Request a handicapped-accessible room. This means that your room will be relatively close to the elevator or stairway. The room will have wider aisles and other passageways, so if you use a wheelchair or walker, it will be easier to get around the room. Bring your HP placard. If you intend to rent a car at your destination, plan to deal with parking in busy places, just like you would at home. If you use handicapped parking at home, more than likely, you're going to use it on the road. As Freund points out, however, you may want to check for any exceptions at your destination. Write down the phone numbers of the local prosthetists you found by researching ahead of time, and that of your personal prosthetist. Invariably I have been in need of a prosthetist when I have not done my homework. Also, keep your own prosthetist's number in your phone and on a card in your wallet in case your phone battery dies. Maybe it's just for peace of mind, but I like to know that help is only a phone call away when dealing with a prosthetic emergency. With these tips, I hope that you'll be able to travel wherever the roads may take you, and that you arrive with a grateful heart. Leslie Pitt Schneider, JD, RN, CCRC (ACRP), HT (ASCP), has 22 years of regulatory compliance, legal, and healthcare experience. She is currently the clinical and regulatory affairs manager for Ottobock Healthcare, Minneapolis, Minnesota. You can read her reflections on a limb loss, fashion, travel, and fitness at www.onelifeonelimb.com .

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What If…? Preparing Patients with Limb Loss for Travel

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