Travelling With Lymphedema

Traveling is a hassle no matter what. But, if you have lymphedema travelling can present special challenges. Certainly, each one’s health issues are different, but there are some common threads:

Compression

The sleeve (or bandages) may not be a very big deal, as long as it is not so tight that your elbow does not bend, ie if you can still use a fork to eat with your lymphedema-hand. The big problem is the glove, especially if it has to cover the fingertips. Then you cannot dial a number on a cellphone, cannot use a mouse on a laptop computer, cannot stick your hand in a bag or suitcase to find things, even grabbing onto a handle in a bus is hard because your hand slips.

For this reason you have to be very well organised: Some things are very important and you don’t want to be without if your luggage is lost or delayed. Medicines, sleeves and gloves, lymphaderm or other creams, mosquito sprays or roll-ons, antibiotics you may need prophylactically or in case you do get an infection. Even if your suitcase does arrive with you, you almost always have to wait for a flight or a connection and then you will need your lymphedema-paraphernalia, compression gloves and sleeves, lymphaderm cream, insect repellent, antibiotics (if you need them, godforbid) etc.

The reduction in pressure in an airplane makes the lymphedema limbs swell. Have you noticed, how cracker bags, chip bags etc are inflated when they are served in a plane? Pressurisation is not perfect in a plane and limbs swell, just like these bags of chips.

You have to put a compression sleeve on your other (non-lymphedema) arm too, if you have no lymph nodes ie the other arm is at risk too. You may want to put it on right before you board the plane, because wearing sleeves on both arms is incapacitating no matter what. Even going to the bathroom with both arms and hands in sleeves is a pain. Put gloves/sleeves on right before take off, and you have to keep them on for ~2 hrs after landing.

All these accoutrements, including the cream must be in hand luggage. Get bags with many pockets and remember what goes where…

Airplanes

There comes the problem: Since ~2006 it is forbidden to have any “liquids” in an airplane. Regulations change but as of 2018, the limit of volume is 100 mls. Note that it is the size of the container that matters, even if it is almost empty. And the size of the container must be shown on the bottle, ie if it is your own homemade lotion it may be thrown away! All liquids must be in checked luggage, but if security rejects your lymphaderm cream, you may still be able to run and put it in your checked luggage, if you have the time before the plane leaves of course. The regulations may be less stringent for short hops within Canada than if you are going to eg Washington, or to Germany.

A letter from your family doctor can work wonders. It can go like this: Ms — has medical conditions that require her to carry lymphaderm cream, Vaseline, handcream, mosquito repellent in spray or roll-on form, cushions (add drugs for good measure…) at all times. This includes but is not limited to airplanes. Signed…

Above all, all these regulations change depending on the issues du jour. After Sept 11 it is terrorism (no nailclippers, scissors, nailfiles, let alone knives, forks, eat with paper ones or your fingers). Then the shoe-bomber in 2006 and you have to take your shoes off, then the Ebola scare, mad cow disease that will lead to prohibition of all sandwiches and food and so on… Surprisingly this time (May 2018) flying from Montreal to Munich (Germany) any food was OK. Even meat and fruit! A few years ago the fear of mad cow disease made all foods out of bounds, you had to gulp it on the spot and choke. Last year I had four nice apples with me at the airport. Confiscated! I simply told the inspector they could have them, they were washed, organic, ready to eat… Sandwiches may have beef and mad cow disease, fruit may have fruit diseases and they used to be a big no-no. Even a straw hat (“plant material”), might go. Now it is the “liquids”. What is “liquid” is debatable, but it seems to include all toiletries. Vaseline is not liquid, but it may be taken away at security’s discretion.

On top of the changing regulations, the airport guards may have quite a bit of discretion in what to allow. The whole stringency may vary by the day and place, depending on the changing scares. Sometimes the clasp of a bra triggers an alarm, othertimes a big belt buckle under a shirt is OK.

A while back prescription drugs were out, unless in their original container with your name on (had to be the same name as in your passport…). I love these little boxes to organize pills. That way you can take with you exactly what you need, not the whole container, and have enough. For drugs I may take if I need them (eg sleeping pills to help with the jetlag), I keep one empty compartment and I write the name of the drug on. Unfortunately, if they are in little boxes, then the drugs are not in the “original container” with your name on, and some inspectors may frown upon this, and you risk losing them.… So, better add whatever medicines you may need to the list in your doctor’s letter. I have the letter scanned too, because they may take it to copy it or whatever, then forget to give it back, and you may forget too in the rush to catch your flight. I have to say that at US customs if you have an accent (like me…) they may search you inside-out, so better carry doctor’s letters. I also carry a letter from my dept head at Queen’s saying that I have tenure at Queen’s, because the border guys may fear I might look for a job in the US (who knows…) and may not let me go, altogether. In short, letters help, because the whole system is conditioned to them, since before the abolition…

I would add to the letter whatever other liquid you may need, eg cranberry juice (for bladder infections), polysporin cream and bandages. You don’t need to have all these with you every single time, but better add it to the letter to be safe. To the very least a letter like this helps you go through security faster. Otherwise they may still allow you to keep eg the lymphaderm cream after arguing back and forth, sometimes with people who are not native English speakers let alone not trained about specific diseases like lymphedema, but you may miss the flight… If you do have time to take it to the checked luggage you may have to pay (~30 Euro=50$ in Germany), otherwise you give up and dump 80$ worth of lymphaderm cream in the garbage… Again, you may carry travel-size creams with you, but weight may be an issue and depending on weight allowances (usually 20 kg transatlantic but often nothing within North America, depending on the ticket), you may want to carry >10mls of cream with you, especially if you have no luggage allowance. Also, be careful because if the transatlantic ticket says 25 kg, the within Europe one may allow 20kg. Then you have to either dump some of your stuff overboard, or pay a fortune. Or, you may wear three pairs of pants, five pairs of socks, three sweaters, two hats and put your heavy book in your pocket and strut through luggage control fine. It works, we tried…

Once you arrive at your destination, compression is a must, especially if the weather is hot. I swim in the pool without any sleeve or glove, but in the sea I always have them on, to protect from the sun, a jelly fish, a scrape etc. Since there might be mosquitoes on the beach, I also wear a jacket on top, since mosquito repellents would be washed away and mosquitoes do bite through the sleeves… After swimming I rinse the sleeves with tap water, but every few days a good wash is a must. The mosquito jacket picks up some plankton or seaweeds and it smells like a fishing net when you get out. With rinsing and drying the smell goes away. You may prefer to put older compression sleeves on for swimming, because the salt does do some damage. If we are allowed by ADP or private insurance just 2 pairs every 4 months, we better keep them preciously…

Infections

If you have lymphedema you are in danger of infection (cellulitis) and this is one of the main reasons you need to control lymphedema. The slightest scrape, as in struggling to put the compression sleeve on, can trigger a nasty infection that can turn into gangrene that can be life threatening. Unfortunately, if you get cellulitis once you may get it again, ie you have to be extra careful. If you do get an infection in a strange land, you need to have intravenous antibiotics, AND right away. If you have to wait for the doctors to decide on diagnosis, precious time may be lost. Again, I have a letter from my family doctor. Even in Kingston a letter speeds up things dramatically. I scanned the letter and made several copies and I was giving them one every time (5 total) when I was going to HDH for the iv infusion of the antibiotics. There must be a bunch of them in my file…

Any tiny scrape can trigger cellulitis, but mosquitoes can be a big threat because you don’t even feel the bite when it happens. As the skin is pressed by the sleeve, blood collects and these beasties are experts at detecting it and biting. They can bite through a sleeve no trouble, and they can detect a spot where the knitted material is stretched and tiny patches of skin are exposed. You don’t feel the bite because they spit some anesthetic first, till after it happened and swelling and infection sets in.

Mosquito sprays or roll-ons help but I do not like breathing the chemicals; once you got cancer you may have a few cells lurking somewhere and you don’t want to encourage them to grow by being exposed to more carcinogens. I don’t like the smell of the roll-ons either, although you don’t breathe it in like the sprays. Besides, as you spray you may miss a patch, or the chemical may evaporate and die out and you lose protection. For these reasons, what I found most effective is a mosquito jacket. They are sold at Canadian Tire and other sports stores. They cover the head too and open with a horizontal zipper under the chin. Personally, I do not find them as convenient because I do not like looking through a net. A bite in my face is not that important, the arms need protection the most.

The material of the bought jacket I got was not that stiff. It might touch the sleeve or arm and the beasties might come and bite from the outside, eg at the elbow where the sleeve is stretched as you bend it. Also, I need a net with the smallest eye, to keep out even small buggers. I found the ideal material at Fabricland in Kingston, at the back with the scraps. It is for Christmas decorations, has HO HO’s, Santas and trees on, but it works the best. I made the sleeves wide and long to cover the hand. Gathered at the cuffs, neck, and the bottom and zip at the front, which makes it easy to put on and off, unlike the bought ones that you put on over the head. I made several, the seams are reinforced, the whole thing folds into a small bag. Be careful because all are made of nylon, ie very flammable material. As the sleeves are very wide, keep away from flames, eg candles, gas stoves, campfires etc.

Mosquito jackets do not need a letter for the airplane, and they work the best. But, if you carry a manual spray or roll-on, make sure it is in the doctor’s letter. (spray cans are not allowed in airplanes anyway). You will need the insecticide at any stopover.

Of course a jacket made out of transparent Christmas material looks odd. If you wear one in Greece people talk to you in English even if you are Greek… Sometimes people ask me where I bought it, it looks cool, like these sexy see-through jackets of 30 (maybe 50!) years ago…

Another potential nuisance that can turn deadly is fleas, eg from stray cats, squirrels, even farm animals or manure spread in gardens. Fleas are in the ground, hidden in grass, waiting for an animal- customer, including humans, to walk on it, then they jump and bite. You don’t feel the bite and they disappear as soon as you try to find them, so it is hard to know it was a flea that bit you. They usually bite up to the height they can jump, ~50 cm, but if you happen to crouch or sit on a ledge then they can reach much higher, including your lymphedema-arm… They bite under your clothes preferentially, so pants or long sleeves don’t stop them at all. Flea bites are especially on the trunk, mosquito bites on arms and legs and face, ie exposed parts. Thankfully, fleas (and mosquitoes) are repelled by insect repellents containing the chemicals DEET or IR3535. DEET also repels ticks, that fall from trees on you and carry Lyme disease too. Natural products such as tea-tree or eucalyptus oils also repel fleas but they do not last as long and they have a stronger smell. DEET is not a carcinogen (ie non-classifiable) and at the amounts we may use it is well tolerated. IR3535 is allowed even for infants. I always put some tea-tree oil in the Lymphaderm cream, to make sure there is enough. However, better put some DEET repellent or tea-tree oil everywhere, even on the trunk, to avoid bites. After applying any of these on my skin I avoid putting my hand in my mouth because they taste nasty. DEET causes a slight numbness of the tongue. Unfortunately, the DEET or its solvent in sprays destroys the elastic material if it is sprayed directly on a sleeve. The damage may only show after you wash it.

So, cream and sleeves and gloves on… Then OFF we go!

By Leda Raptis, July 2018