Mackenbach, Germany
December 3, 2016 at 0900 hours
Many years ago, I wrote an article for a travel magazine called “You and Europe” in a city not far from here. The article, which dealt with hitchhiking rides on military aircraft throughout what we used to call the “European Theater” was titled “Traveling Space Available.”
Now, years later, and traveling with a gastric tube feeding apparatus on board and a supply of formula, I find those words take on a very different meaning. Will there be space available on the airplane for my supply of formula? Is there “space available” in the cabin for the occasional and necessary feedings? Can I replenish my supply of formula while traveling here in the USA and abroad? Will I join my wife or others for meals out in cafes or restaurants? Is it all worthwhile?
The answer to all these questions appears to be a qualified “yes.”
“Travel is intensified living . . . travel is freedom. It’s recess, and we need it.” So said travel guru, Rick Steves, about Eastern Europe in 2004. This is just as true (and maybe more so) when you have a feeding tube.
Here, I will share some of my recent experiences with the feeding tube community and those who may wish to undertake a similar challenge, from engaging the TSA authorities at the airport, to the planes and trains and hotels and restaurants encountered along the way.
Here are some excerpts, somewhat embellished, from my travel journal.
November 2016
San Francisco Bay Area
Pre-departure
The German word for preparation is “Vorbereitet,” and for confidence, “Vertrauen,” and you need the former to get to the latter.
First, one can obtain a document from TSA, which consists of a notification card for individuals with “disabilities” and medical conditions (quotations added).
They will, upon your request, supply a blue and white document stating that you have a “gastrostomy tube,” and this will expedite your passage through security and boarding the aircraft and facilitate your boarding with an additional bag for the formula.
You can contact TSA at 1-855-787-2227, weekdays call-in 8 a.m. to 11 p.m. The online contact center is “TSA – Contact Center at tsa.dhs.gov.”
As for the formula, I took several days’ supply with me, and found a medium size carry-on which, with the TSA permit, I was able to bring on board without any difficulty in addition to the regularly scheduled luggage. (The new Jevity “soft package” will be excellent for this.)
In the United States, some of the providers of formula will forward a supply to you at your US destination if you contact them with this request in advance.
But, as discussed below, this delivery option isn’t available for overseas destinations.
Tuesday, November 29, 2016 at 0830 hours
Over the Atlantic – Delta Airlines
New York City to Frankfurt
I am doing fairly well with my Jevity and will have at least two more feedings during this overseas leg. Here, in the window seat, I’ve set up a couple cans of formula, and my feeding tube is easily accessed through my “Tubenmann shirt.” (See http://www.tubenmann.com for more about this product.)
This procedure is very inconspicuous. The flight attendants all appear interested, supportive, and unhappy for me that I can’t share the meals that they have to offer. However, I have had some coffee served to me in a pitcher normally used for cream which is perfect. Still with my “Tubenmann” shirt, I just pour some of the coffee in the syringe and I’m really quite happy with this. Once settled in, and with a little preparation, the flight is going well.
Monday, November 30, 2016 at 0900 hours
Local Train – Frankfurt to Wiesbaden
Boarding the train with the extra bag for the Jevity is a little tricky, even though it is considerably lighter than when I left the States. I’m finally settled in a first-class compartment with table seating and have an arrangement set up where I can access the Jevity, again with my Tubenmann shirt, easily, unobtrusively, and comfortably as the landscape goes by.
It’s been a long trip so far, I’ve gone through a half-dozen cans of formula, but I’m doing fine, satisfactorily overseas, and well on the way.
Tuesday, December 1, 2016 at 1700
Mecure Hotel – Wiesbaden, Germany
Finally scored a mini suite here in this excellent hotel – need the extra room for the tube feedings. I’ll be here awhile (teaching at a nearby college) and want a regular, relaxing set up. But, I’m running out of formula!
This will happen. You can only carry so much Jevity or other favorite nourishment with you. Until you sort out the local sources to replenish your supply, you may have to rely on substitutes found in most Apotheke or drug stores. Ensure is good, as is the Carnation Instant Breakfast powder product; and, I discovered a liquid protein energy drink called “Fresubin” which can be obtained from Apothekes in Germany, and is designed for tube feeding.
It’s surprising how dependent we become on routine, our usual product and amount, and regularity (psychologically and physically).
But, once you have developed some confidence in the new protocol, things fall into place. After all, you adapted to this strange new world in the first place.
Now Abbott Pharmaceuticals does, indeed, have a manufacturing facility right here in Wiesbaden. However, you can’t just drive up and ask for a coupl
e cases of formula. (Believe me, I intended to do just that.) No. You have to work through a pharmacy in Germany and, in other countries, a similar store with a green cross, lit up in window.
They then order your Rx from, in this case, Abbott, and it’s delivered to the store.
I found a pharmacy willing to order my Jevity Plus 1.2. They did so, and then even began delivering the formula directly to the hotel – an altogether perfectly satisfactory arrangement once I had it put in place.
The formula is packaged differently than in the States – the containers are larger and contain more than one serving.
It was a reassuringly good feeling to have this supply replenished.
December 5, 2016 at 2100 hours
Wiesbaden, Germany
Travel invariably involves bars, cafes, and restaurants. From time to time it is easier for my wife and I to just order room service, but this evening we are having dinner in the hotel restaurant.
Again, with my Tubenmann shirt, I was able to access my feeding tube and syringe and quite unobtrusively had a can of Jevity while my wife was able to enjoy her meal. The wait staff was fine with this, and left us alone, except for taking my picture.
Friday, December 9, 2016 at 1130 hours
ICE Train from Wiesbaden through Dresden
I am on this excellent ICE fast train from Wiesbaden through Dresden to Prague. The car attendant is serving coffee and cappuccino, and I tell her that I would love some but explain about my “G-tube” and that I need a pitcher-like vessel to pour the coffee into the sy
ringe.
Not only do they supply me with such an item but, astonishingly, they have on board “ecoject prus” syringes, a product almost identical to mine. I asked the attendant about this. Do you often see people with G-tubes?
No, this apparatus, which she correctly assumed would suit me, is routinely on board as a functional component of their coffee drip machine.
Quite a coincidence. I thought for a minute that the “awareness” regarding dysphagia-related problems, a subject of one of NFOSD President, Ed Steger’s missions, was well advanced on the fast trains. No – a happy coincidence.
This is an 8-hour ride, and I’ll have some more Jevity during the trip.
Sunday, December 11, 2016
Prague, Czech Republic
I scored a new supply of Jevity today from my wife’s cousin here who was able to order a dozen 5 ml bottles of Jevity Plus 1.3 (close enough for me), proudly proclaiming it was “made in the EU” on the boxes.
He was able to order this from Amazon in advance of our arrival, which worked out just fine. I now have a supply sufficient for my stay in the Czech Republic and the train ride back to Wiesbaden, where further resupply awaits me at the hotel – delivered again by the local pharmacy.
December 16, 2016
Delta Airlines – Over the Atlantic Frankfurt to JFK
Now very familiar with this on-board protocol, I’m well settled in business class with my feeding apparatus, Tubenmann shirt, and a supply of formula sufficient for this cross-Atlantic trip.
We’ve more than survived a remarkable European adventure and found ways for me to acquire the necessary nourishment throughout.
“Of course, travel, like the world, is a series of hills and valleys. Be fanatically positive and relatively optimistic. If something is not to your liking, change your liking.” Rick Steves, again.
I’ll be leaving again shortly for The Oley Foundation conference in Connecticut. This is a comparatively short cross-country flight followed by a train from Stamford to Washington (The Acela). I’ll have my TSA certificate for the flight with enough Jevity for the trip and I will wear one of my Tubenmann shirts, and expect to do just fine.
Bon voyage, and travel safely, and remember, “it’s not just the shirt, it’s the attitude.”
Tom Dawson
Tubenmann