Summertime and “the living is easy, fishing are jumping and the cotton is high.” Or, maybe its Winter and you are tired of the snow and cold and decide it is time to run to the islands for a couple weeks of sun and surf. Just because you have lymphedema, there is no reason why you can enjoy traveling, going on vacation or just going to see friends and family.
There are certain practical things you can do to remain safe and not put yourself at risk for a worsening of your lymphedema or to experience cellulitis or other complications when traveling. We hope the tips and extra info listed below will help you enjoy your experience.
There are three reasons for wearing compression wraps or garments while flying. It helps to understand the dynamics of how lymph fluid flows through our system. The muscle action of our bodies pushes against the air pressure which creates the “pump” action for lymph flow.
In flying, this outside pressure changes and fluctuates dramatically, thus causing the pump action to be far less efficient. The result is that the fluid finds it increasingly difficult to leave the arm.
The second reason is that a person is quite sedentary during air flight. Without the muscle activity, lymph flow is already greatly diminished which again leads to increased fluid retention or fluid pooling.
The final reason is the over exertion of the limb involved with carrying baggages, suitcases, etc. This type of extreme exertion may cause an inflammatory response, which we know leads to increased swelling.
There isn't much one can do about the air pressure. One thing I always do while flying is those subtle stretch exercises. Muscle flexes, limb stretching and other very low impact exercises can help. These will also decrease your chance of blood clots, which are another concern with being cramped up with lymphedema.
The over exertion can be helped by learning to pack light, using suitcases with wheels and pull handles, and by being careful of the weight factor on any carry-on luggage. Also, plan your schedule efficiently so that you are not having to make those mad exhausting last minutes dashes.
Pat O'Connor Lymphedema People
© 2005 Pat O'Connor
1. Check with your doctor that you have enough prescription drugs (if you need them) to see you through your holiday. Get them filled by your pharmacist before you leave, however, carry the scripts with you in case of mishap, or for checking by foreign Customs Officers (which may happen).
Ask for a prescription for antibiotics as a precaution if you do get an infection, and carry them with you. (Penicillin is the one of choice, unless you are allergic to this). If you are travelling to a tropical country in the wet season, where filariasis is endemic, take D.E.C. with you. Take one dose/week. If you feel ’flu-like symptoms after taking it lasting for 24 hrs., then take another dose the following week etc.
2. Buy a top quality sunburn cream SPF 20-30+. Remember you can get sunburnt through a compression garment, especially the synthetic fabric makes. Take moisturising lotion and body wash -mineral-oil based. (not soap)
3. Travel Insurance (that covers health as well as luggage) is worthwhile providing you read the small print. You may have to state that you have a pre-existing condition to claim payment if you need treatment. (This may need to be signed by your Doctor.)
4. Buy some insect repellent, and take something to treat stings if you do get them. A good perfume seems to work as well as repellent - buy some duty free!
5. Pack some antifungal powder and use it, especially between the toes! This may only be a prophylactic measure (to prevent infection), but hotel bathrooms, pool areas and warm moist climates in particular, can lead to the onset of tinnea (Athletes foot). This can be easily transferred to the groin or under the breast fold areas, especially when lymphoedema is present. Apart from inflammation, it also causes breakdown of the skin so that bacterial entry is facilitated, which may lead to bacterial infections. This powder may also need to be “puffed” into your shoes especially if you are wearing sneakers or boots.
6. If you need vaccinations, do not have them in the affected limb! Sometimes you get a reaction to these, so if possible have them at intervals, if you need more than one.
1. Cases. For flight take a small and as light a case (or two smaller ones if need be) as possible, unless you are travelling with someone who can carry it for you. A case with wheels is advisable (but you can only manage one)! If you are by yourself, get a porter to help you if one is available. I know this can be expensive in some airports but if it means you have a safe and happy holiday it may be worth it! Don’t remove a case from a luggage carousel with a lymphoedematous arm. If you have a lymphoedematous leg/s, be careful not to bump them when you remove luggage from the carousel or when you try to load cases onto a trolley. Try not to let someone run into you from behind and cause damage! I know this is often difficult in big airports, but it is better to stand back and let impatient people get their luggage first than to risk damage!
2. Hand luggage. Realise that you really do not need much, even when on long flights e.g. a sweater, a book, minimal makeup and a change of shirt or blouse in case something gets spilt on you during travel! Don’t carry this with an affected arm! Include your travel documents in this rather than carry a separate bag. Carry your medication with you, or at least enough to last you for a few days.
3. If you are going to a holiday home by car, please get someone to help you move cartons (of food etc.), or anything that is heavy. Onset of lymphoedema has often been triggered by this situation. Get help also loading and unloading pre-bought supplies from the supermarket etc.
4. Clothing. Clothing for travelling should be light, loose and non-constricting, especially around the waist (or under the breasts). Be careful of belts and jewellery. Clothing should preferably be layered so that you can remove a jacket if you are going from a cold to a hot climate or vice versa. Wear comfortable shoes. If you have lymphoedema of the leg/s it would be better not to remove them during travelling. Don’t travel in short skirts or shorts if you have lymphoedema of the leg/s - infection can be easily picked up from the aircraft seats.
5. Compression garments. Check that these are in good condition before you leave. If you have an old one, take it as a back-up garment in case something happens to your good ones! If you have been wearing a sleeve that stops at the wrist or stocking that leaves the toes exposed, then a glove on the hand is necessary during flight and it would be a good idea to bandage the toes and any exposed foot area before donning the stocking.
6. If you are travelling in some countries e.g. China, realise that the pressurisation in aircraft is not necessarily of the same standard as in International Aircraft Companies. As an extra precaution you could consider taking a blow up “splint” which one patient used most successfully in place of a garment under these circumstances. She said this got “very tight” during flights, but she returned without any onset of lymphoedema. The alternative is to wear two garments - one over the other- or to bandage as well as wearing a garment, if you can, to provide extra pressure. If you are bandaging, remember to pad at the back of the knee for comfort and to stop chafing and also around the ankle with leg lymphoedema and at least in the elbow fold with arm lymphoedema.
1. If travelling by air, some airlines may still allow you to request an emergency exit (or a bulk head seat). This means that your “light” travel bag can be used as a foot rest in front of a much larger space! Economy classes put seats so close together these days that someone with long legs often cannot sit with their feet properly on the ground or foot rest. This is dangerous, not just for patients with lymphoedema, but also can cause D.V.T. (deep vein thrombosis) when this position has to be maintained for many hours. Consider an up-grade to Business Class (?) even if it means a good holiday every 2 or 3 years rather than one each year!
2. If the flight is a long one, try and arrange a “stop-over” for 1-2 days on the way. Some airlines include this as part of their package.
3. If a long bus-trip is being booked, choose one with as many stops as possible and get out and move when these occur! If you have a long car trip then you can stop frequently and have a 5 minute exercise break! Remember to protect your limb from the sun with a white cloth or shirt etc. if you are sitting on the sunny side of the vehicle. If, on a bus, work out which side the sun is going to shine on the bus and request a seat on the opposite side.
4. If going to a Ski resort or mountains realise that the lowered atmospheric pressure as you ascend can either trigger or worsen lymphoedema. Take the same precautions as you would during flights, (or watch the limb carefully) and apply pressure as needed.
1. Keep your seat belt loosely fastened so that you have room to move as much as possible, except during take-off and landing or during real turbulence, when it should be properly tightened.
2. Get up and move around as long as the “fasten-seat-belt” sign is not alight.
3. Exercises and self-massage can be done whilst seated. Shoulders can be rolled and breathing exercises done. Appropriate nodal clearance e.g. under arm and/or in the groin as is appropriate for your situation, and then trunk clearance towards these nodes, with light stroking towards them, can be done, especially under a blanket which is supplied during flights. Feet can be flexed and pointed and ankles rotated, as can be fingers and wrists.
If you have lymphoedema of the arm you could take a ball to squeeze, or clench your fist and twist your arm outwards and inwards much like you would “wring” a wet towel, with your arm above your head if possible. If you stop on a longer flight and are allowed to enter the terminal, get out and walk around.
The same applies to these as to aircraft flights.
Watch a funny movie whilst travelling if it makes you laugh - this is good exercise -and it will relax you which means better flow of lymph. I suppose that one that is exciting so you tense, and then gets hilarious, so that you relax and laugh (which means breathing and exercise) is the best of all!!
1. Do not remove your garment for a few hours or until you reach your hotel etc.
2. Then have a cool shower and a rest with the affected limb elevated. Use a “Body Wash” -(mineral-oil based cleanser) and then a good moisturiser on the affected limb particularly.
3. Some more exercise would be good at this point!
4. Wash all your travelling clothes (or dry clean) before wearing again.
5. Then start to really enjoy your holiday!
1. Many of the above points still apply.
Avoid insect bites (especially spider bites) (iii) Don’t overdo sports that you are not used to. Be wary of the more strenuous excursions that may cause trauma (or bumps and stress) to limbs.
(iv) Beware of fungal infection (tinnea) (see p.1)
(v) Wear buckle-up plastic sandals if you have lymphoedema of leg/s, if on the beach or paddling. If on a coral beach or snorkelling near coral, be extra careful. Coral infection can cause lymphoedema in people with normal limbs.
(vi) Use a good skin moisturiser.
(vii) If it is hot, realise that you can cool your limb with your compression garment on just by wetting it! Put your limb under a tap or shower! Evaporation will then cause cooling!
(viii) Be careful shaving, pushing back cuticles etc.- the general “Do’s and Don’ts” (see previous newsletter or Information Book).
(ix) These are just general precautions when travelling, and although particularly applicable to a person with lymphoedema basically apply to every member of your families as well! A lot of it is good common sense! Holidays are a time for enjoyment, but also give you extra space to pamper yourself. Relax and do it.
Try and do all the things that you want to do. Take what simple precautions that you can - and have a wonderful and safe holiday.
Why do aircraft flights trigger the onset or worsen already existing lymphoedema?
This first came to my attention in 1995-1996 when I had about 12 telephone calls in a 3 month period from patients who had developed lymphoedema (suddenly). When I asked for some case history, or the information was volunteered, most of these were post-mastectomy or post-pelvic cancer patients and had undergone a long flight when they felt better and they and their family needed a holiday. The limb had “blown up” during the flight, which situation was of course, a disaster for a happy holiday.
* 1… HAVE YOUR CHRONIC MEDS FILLED BEFORE YOU LEAVE.
* 2… TAKE PRECAUTIONS IN CASE OF INFECTION IN LYMPHEDEMA AFFECTED LIMB.
* 3… TAKE TOP QUALITY SUNBURN CREAM SPF20-30 - ….> REMEMBER YOU CAN GET SUNBURN THROUGH COMPRESSION GARMENT.
* 4….TRAVEL INSURANCE
* 5….INSECT REPELLANT (IDEALLY DEET-FREE)!
* 6….IF VACCINATIONS ARE REQUIRED DO NOT HAVE THEM IN YOUR AFFECTED LIMB!
* 7….DON'T REMOVE LUGGAGE FROM CAROUSEL WITH LYMPHEDEMATOUS LIMB.
* 8….CARRY YOUR MEDICATIONS WITH YOU, OR AT LEAST ENOUGH LAST FOR A FEW DAYS.
* 9….AVOID LIFTING OF HEAVY ITEMS - ONSET OF LYMPHEDEMA HAS OFTEN BEEN TRIGGERED BY THIS SITUATION. »»»»GET HELP!! ««««««
* 10…WEAR LOOSE, LIGHT NON-RESTRICTING CLOTHING. 11…COMPRESSION GARMENT - MAKE SURE IT'S IN GOOD CONDITION BEFORE YOU LEAVE.
Alternative names Travel health tips
Bring nonprescription medications that you might need with you.
If you are leaving your children, leave a consent-to-treat form with whomever is caring for your children. If you are planning a long flight, minimize jet lag by scheduling your arrival at your destination at roughly your usual bedtime, according to the time zone to which you are flying.
If you have an important event at your long-distance destination, plan on arriving 2 or 3 days in advance, if possible, so that you will be fresh for your appointment.
Take immunization records, along with any other important medical records, especially when traveling to another country.
When traveling to an underdeveloped country, make sure that everyone in your traveling party is adequately immunized against any infectious disease you might encounter. Some countries require certificates of vaccination against diseases such as cholera and yellow fever. Check with your health care provider and see the section on immunizations.
* Upon arrival, check the local emergency number. Not all communities use 911.
* When traveling with children, make sure that they know the name and telephone number of your hotel in case they get lost. Give them enough money to make a phone call and make sure they know how to use the phones if you are in a foreign country.
* When traveling to less economically developed countries, don't drink the water if you want to avoid the risk of diarrhea. Remember the ice may also be contaminated if there is concern with the water. Bottled water may be safe, as long as it is factory bottled. Traveler's diarrhea can also result from drinking beverages that contain ice. Bottled carbonated sodas, beer, and wine (without ice) are safe.
* Cooked foods are usually safe, but raw foods and salads (lettuce, raw vegetables, fruit with peel, unpasteurized milk, milk products, undercooked seafood or meat) can lead to gastrointestinal problems. Eat in restaurants that have a reputation for safe cooking.
* If you come down with diarrhea, drink plenty of bottled liquids. Broths and carbonated beverages are good for maintaining your strength.
* If you are visiting an area where diarrheal illnesses are common (Mexico, for example), speak with your health care provider about getting a prescription for antibiotics. Fill the prescription and take it with you in case you fall ill.
* When traveling long distances, expect your body to adjust to a new time zone at the rate of about 1 hour per day.
A few minor precautions and strokes of the pen can save you considerable hassle later on. Doing some homework can save you time, money, and offer peace of mind if you encounter health problems while traveling.
Medical practices in other countries may be very different from those found in the United States. Add to this the potential for language barriers and unfamiliarity with your medical history and the value of planning for potential medical care becomes obvious.
The following tips, contact information, medication names, and additional resources will help you be ready for medical needs both minor and critical.
If you aren't very familiar with the country you are visiting, the US State Department Consular Information Sheets and Travel Advisories are a good place to start, to see what type of medical services will be available to you once you are there.
Write down the following information in your address book, journal, itinerary, or other location, preferably one that you will have with you at all times. Also, ask your doctor for a contact name and number in the event of an emergency that occurs when your own doctor is not available.
* Your regular doctor's office and home phone numbers in case you need a consult while traveling.
* HMO/insurance company contact information in case you need to get approval for treatment.
* Embassy contact info for countries in which you are traveling.
This information should be in your carry-on luggage, wallet, purse, billfold, or fanny-pack and with your primary identification, so that, should you be incapacitated, whoever comes to your assistance will find it. If you have serious allergies or medical condition such as diabetes, be sure to ask your doctor about medical emergency bracelets.
Before you call your doctor or insurance company, try to obtain complete contact information at your location, including a fax number. Your provider will often be able to fax pertinent documentation to your location.
Common brand names at home may not be available or widely known where you are traveling. Knowing the generic/medical names of common medications may help you find the over-the-counter medications you need, and help you avoid taking the wrong medications. If possible, pack these items in a first-aid kit before you leave. The following generic medication names should help if you need to replenish your supplies while traveling.
Advil/Motrin/Alleve = ibuprofen
Tylenol/Excedrin = Acetaminophen for fevers or pain Bayer, others = Aspirin
Benadryl (antihistamine) = diphenhydramine
Dramamine = dimenhydrinate, diphenhydramine hydrochloride, meclizine (bonine) Mylanta or Pepto-Bismol = contains bismuth subsalicylate
Antacids = calcium carbonate, aluminum hydroxide, or magnesium hydroxide
* Check your guidebook - many include health doctor recommendations.
* Especially at upscale lodgings, ask the hotel concierge for physician recommendations. Some doctors will make “house calls” to your hotel.
* Contact the nearest medical school, where you will often find English-speaking doctors and students.
The following agencies provide contact information for English-speaking doctors throughout the world. Note that the following links are to disclaimer pages on the sites; the Web sites do not guarantee the links or information found, or the quality of the care at the clinics. We recommend that you read the disclaimer, but keep in mind it doesn't necessarily mean you can't trust the doctors and clinics in the list.
Membership with a medical assistance company buys you access to an extremely wide range of medical and other services, from the mundane (vaccination recommendations, doctor referrals, and legal advice), to the dramatic (repatriation, emergency evacuations, and emergency cash loans).
Plans, services, and prices can vary widely, so read all information carefully, and compare the various service levels and companies. Some recommended medical assistance companies include:
The following government and private agencies provide valuable information for US citizens traveling abroad:
US Department of State Overseas Citizens' Services M-F, 8:30-5:00 PM: (888) 407-4747 or (317) 472-2328 Weekend/After-hours Emergencies: (202) 647-4000. Be sure to ask for the OCS duty officer.
The American Society of Tropical Medicine and Hygiene 60 Revere Drive, Suite 500 Northbrook, IL 60062 (847) 480-9592
For our Friends and Membrs in the UK
This section is about travel insurance and the options available for people who have or have had cancer. You can scroll down the page to read all the information here. Or you can use these links to go straight down to sections on
* Why have insurance
* Why does cancer make a difference?
* If you have cancer now
* If you’ve had cancer in the past
* Your destination and their health services
* The cover you can get
* What you need to tell them
* Your fitness to travel
* Health care agreements with other countries – form E111
* If you know you’ll need treatment while abroad – form E112
* Specialist policies and specialist insurance companies
The Air Carrier Access Act prohibits discrimination on the basis of disability in air travel and requires U.S. air carriers to accommodate the needs of passengers with disabilities. The Department of Transportation has a rule defining the rights of passengers and the obligations of air carriers under this law. The following is a summary of the main points of the DOT rule (Title 14 CFR, Part 382).
* Carriers may not refuse transportation to people on the basis of disability. Airlines may exclude anyone from a flight if carrying the person would be inimical to the safety of the flight. If a carrier excludes a person with a disability on safety grounds, the carrier must provide a written explanation of the decision.
* Airlines may not require advance notice that a person with a disability is traveling. Carriers may require up to 48 hours’ advance notice for certain accommodations that require preparation time (e.g., respirator hook-up, transportation of an electric wheelchair on an aircraft with less than 60 seats). Carriers may not limit the number of disabled persons on a flight.
* Carriers may not require a person with a disability to travel with an attendant, except in certain limited circumstances specified in the rule. If a disabled passenger and the carrier disagree about the need for an attendant, the airline can require the attendant, but cannot charge for the transportation of the attendant.
* Airlines may not keep anyone out of a seat on the basis of handicap, or require anyone to sit in a particular seat on the basis of handicap, except as an FAA safety rule requires. FAA's rule on exit row seating says that carriers may place in exit rows only persons who can perform a series of functions necessary in an emergency evacuation.
New aircraft with 30 or more seats must have movable aisle armrests on half the aisle seats in the aircraft. “New aircraft” requirements apply to planes ordered after April 5, 1990 or delivered after April 5, 1992. No retrofit is required, although compliance with on-board wheelchair requirements (see below) became mandatory on April 5, 1992 regardless of the plane’s age. As older planes are refurbished, required accessibility features (e.g., movable armrests) must be added.
* Airlines are required to provide assistance with boarding, deplaning and making connections. Assistance within the cabin is also required, but not extensive personal services. Ramps or mechanical lifts must be available for most aircraft with 19 through 30 seats at larger U.S. airports by December 1998, and at all U.S. airports with over 10,000 annual enplanements by December 2000.
* Disabled passengers’ items stored in the cabin must conform to FAA rules on the stowage of carry-on baggage. Assistive devices do not count against any limit on the number of pieces of carry-on baggage. Wheelchairs (including collapsible battery-powered wheelchairs) and other assistive devices have priority for in-cabin storage space (including in closets) over other passengers’ items brought on board at the same airport, if the passenger with a disability chooses to preboard.
* Wheelchairs and other assistive devices have priority over other items for storage in the baggage compartment.
* Carriers must accept battery-powered wheelchairs, including the batteries, packaging the batteries in hazardous materials packages when necessary. The carrier provides the packaging.
* Carriers may not charge for providing accommodations required by the rule, such as hazardous materials packaging for batteries. However, they may charge for optional services such as oxygen.
* Other provisions concerning services and accommodations address treatment of mobility aids and assistive devices, passenger information, accommodations for persons with hearing impairments, security screening, communicable diseases and medical certificates, and service animals.
* Training is required for carrier and contractor personnel who deal with the traveling public.
* Carriers must make available specially-trained “complaints resolution officials” to respond to complaints from passengers and must also respond to written complaints. A DOT enforcement mechanism is also available.
* The rule applies to all U.S. air carriers providing commercial air transportation. ‘Indirect’ air carriers (e.g. charter operators) are not covered by certain provisions that concern the direct provision of air transportation services.
* Carriers must obtain an assurance of compliance from contractors who provide services to passengers.
Join us as we work for lymphedema patients everywehere:
Advocates for Lymphedema
Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.
Pat O'Connor Lymphedema People / Advocates for Lymphedema
Children with Lymphedema
The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.
Lipedema Lipodema Lipoedema
No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.
Come join, be a part of the family!
MEN WITH LYMPHEDEMA
If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema. http://health.groups.yahoo.com/group/menwithlymphedema/
All About Lymphangiectasia
Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.
Lymphatic Disorders Support Group @ Yahoo Groups
While we have a number of support groups for lymphedema… there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.
Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.
Teens with Lymphedema
All About Lymphoedema - Australia
Updated Jan. 21, 2012