On the Road with Diabetes

We often joked that planning our itinerary through 13 countries, 15 flights, 10 trains and 2250 km by bike was simple. It was figuring out the diabetes logistics that was the tough part. How to keep insulin cool for six months? How to squeeze two months + of pump supplies into bike panniers? How many extra supplies to carry? Could we ship supplies? What if our bags got lost or stolen? What if Amos got sick? The mental gymnastics were all a bit daunting at times, but we muddled through. Here are some thoughts on planning/executing a six month trip with diabetes along for the ride, including our master packing list if you want to try it yourself!

It must be said from the beginning that we literally could not have done it without a pit crew of generous friends, family and medical professionals. We had grandparents mailing insulin and extra supplies, an aunt smuggling insulin in her suitcase, pharmacists pack-ratting supplies and a medical team that only ever expressed complete support for our crazy plans. They were as much a part of this trip as we were.

We’ve been at diabetes for a long time now; Amos was diagnosed when he was 17 months. At the time, one of my main worries was whether we could travel again, especially the off-the-beaten track, pack-it-light travel that Ian and I love and had imagined doing with our family one day. It took a ton of pre-planning, calculating what supplies were needed, researching customs regulations and postage prices. After so many years of Amos having diabetes, and a few practice holidays, diabetes has become second nature, like the third child in our family. We managed to (mostly) take diabetes in stride, and didn’t let it stand in the way of the out of the way places and adventures we had. 

But I won’t pretend that it was always easy on the road. There were challenging times, for sure. Like when everyone was cranky from the heat, Amos had been 17 + for hours straight and we were (not) sleeping in a tent, where early morning birds or noisy neighbours kept us awake. Or when tap water wasn’t OK to drink, or malaria pills made Amos lose his appetite, even for juice. Or when he had a heat reaction to the adhesive for his infusion sets, or kept going low bouncing on the trampoline at 1900 metres of altitude outside Swiss mountain hut. Or when he stayed out in the surf for hours, loving bogey boarding, and came out of the water at 2.1. We’ve treated lows on top of church spires, outside caves, rolling along on the tandem, and roaring down highways in the back of a camper van. 

Ian and I have different approaches to diabetes, we always have. He is wonderfully relaxed about the whole thing, with the attitude that “we’ll deal with it if it happens”. My approach is to worry more, and over-plan. Imagine the contingencies, figure out how much we need just in case, and then bring double that amount. For this trip, we leaned towards my approach (at my insistence). Definitely brought more than we needed, but I had the piece of mind that I needed to not worry about it while we were away. Our complete packing list is at the end of this post.


Highs and Lows

Amos’s blood sugar levels aren’t stable at the best of times, and this trip kept us on our toes. Everything affects blood sugar: carbohydrates (up), except when they are fatty or processed (down, then up); altitude (down); exercise (down); no sleep (up/down/up/down), hormones (all over the place); failed infusion set (up); new insulin (faster downs). 40 degree weather in Thailand needed a lot more insulin; 1900 metres altitude at a Swiss mountain hut hardly needed any. Until the next day, when it needed lots. Late nights and new foods add to the cocktail of uncertainty. We would just figure out the insulin dosing when we would move onto the next place.   

  Lows: Through the marvels of globalization, drink boxes were available everywhere. Amos sampled the world: blueberry juice (Austria), passion fruit (favourite- Australia), weird yogurt-based drinks (Thailand) and lots of healthy, organic multi-vitamin mixes (Central Europe). When those are missing, Fanta has a healthy corner on the international market. As does Skittles, Haribo gummies and delicious Thai bananas. A bit afraid to see Amos’ next dentist visit, but what can you do? We brought a few big jars of Dex with us, and wish we had had more. We didn’t find a similar tasting product anywhere else. Dextrose tablets were widely available in Europe but Amos didn’t like their pasty-ness.

Highs: One of our favourite things about travel is sampling the different foods along the way. Oh, the delicious, delightful soft, gooey carbs…we knew there would be many carbo rich meals on this journey, both at people’s homes and eating out. Amos ate as the rest of us did. An ice cream a day in Australia and Thailand. A piece of cake a day on our bike trip. Poffertijes, crepes, caneles, sugary yogurts, chocolate, fries, sticky rice with mango…We guessed as best we could, and made many, many wrong guesses. We abandoned perfection a long time ago, and accepted that there would be a lot more highs than home. There were many night time wake ups trying to bring him down, and lots of enforced breaks to run around the park and burn off carbs and monkey energy. The Dexcom sensor (CGM) helped a lot. Curious to see what his A1C (three month average blood sugar) will be when we get home. EIther way, we won’t feel guilty about it.  

 Airplane travel

Airport security. Argh. We had 14 flights in all. It’s never the same, but almost always a pain in the ass. It took us almost 30 minutes to clear the first check into the US, by the time they had quizzed Amos about his sensor and swabbed the juice boxes. We carried a 1 month supply of syringes, infusion sets, glucagon etc with us on the plane in case of lost baggage. We learned with experience to show up early, and have everything diabetes related together in a cloth shopping bag, easy to open. We know now to present the letter from the doctor right away, pull out the pumps (3 in total!) to bypass the X-ray scanner, and open up the small insulin cooler with ice packs to avoid questions. 
Most security people were very understanding and helpful- except for one Thai agent who wasn’t going to allow us to fly with our juice boxes since they were a “sweetened yogurt drink” and not the “juice” specified by the doctor. All worked out. 

  
On the plane, no special arrangements needed. Just unplugged the pump at take off and landing. Apparently, air pressure can squeeze extra insulin out if there are air bubbles. Yikes.

Insulin

The toughest logistical detail to figure out was the insulin. Insulin can last up to 28 days out of the fridge, as long as it is not too hot or cold. To keep it at a stable temperature, we used the Frio packs and rehydrated them every few weeks in cold water. A small Frio pack was in our daypack, a larger Frio pack in luggage.  
To keep insulin longer than 28 days, it needs to stay refrigerator-cold. We spent a lot of time thinking about what to do with the other 5 months worth of insulin. Doctor visits overseas were a possibility, but we didn’t want the hassle and weren’t sure about whether the formulation would be exactly the same. Over the counter was available in some countries, but not others. We came up with a plan that we would get two insulin shipments mailed to us, one for Month 3 to Joop’s in Delft in Holland (start of bike trip), and Month 4-5-6 to Blake in Vienna at our halfway point. We would store months 5-6 in the fridge in Vienna and pick it up on our way back through at the end of the bike trip. In between, we would make sure that we kept the insulin refrigerated. Easier said than done.

THe first shipment from Canada to Holland, nicely packed on ice packs in a temperature controlled envelope, was turned back at customs (lesson: never declare that it contains medicine on the customs label). The insulin, now warm, went back to Canada. It was shipped again (“medical supplies” seemed to be OK to get through Dutch customs this time). By this time, we’d left Holland. It was mailed onto us in Germany. Got held up at customs again (forgot to mention: do not label it “medicine”…). By this time, we’d left that part of Germany. It was mailed onto us in Eastern Germany. Four weeks and many hands later, we got it! Can’t remember if we used this one or not…?

Worried by this first experience of shipping insulin, we were delighted that my sister Adrienne decided to at short notice come and meet us for two weeks of biking in Austria, at the 3 month point of our trip. A perfect insulin mule! My mom transported the insulin for months 3-4-5-6 to Adri in Whistler, packed on ice. Adrienne carried it in her baggage all the way to Passau. Perfect. And then, in our excitement and tiredness of our first day together, we forgot to put it in the fridge. Warm insulin. Argh. It ended up working fine in the end, but we had a few moments of collective forehead slapping.
During our bike trip, we generally only travelled with our 28 day supply of insulin in our panniers, no refrigeration needed. There was a 10 day period between where Adrienne met us in Passau and Blake’s fridge in Vienna where we carried a multi-month supply with us that needed to be kept cold. Tricky in 30+ degree weather. Fortunately, many campsites had fridges in the office, and happily kept insulin cool and refroze our ice packs. We would also buy frozen veggies at the store in the morning and store everything in an insulated cooler bag, wrapped in a blanket. 

During our last month (August), we visited many different friends and were on the move every few days. No surprise – we forgot the insulin at one of the stops, in the fridge. JEanne quickly couriered it to us from France to Switzerland. Turned back at the border. Forgot to mention: “do not label it medicine”. Argh. Not sure what to do (insulin was now warm…), Ian stopped by a Swiss pharmacy. After a quick consultation with her colleague, the pharmacist happily handed over a new box of shiny new, COLD, insulin. Over the counter. It cost the same as the failed courier trip (80 USD). Ah well, at least we’re stocked up for home now!

Continuous Glucose Monitor (Sensor)

I cannot stress how important this little device was to our collective happiness on our trip. The CGM, which takes Amos’ blood sugar reading automatically every 3 minutes, and transmits the results to a remote, gave Amos and everyone else a lot more freedom and peace of mind. Amos would strap it to his pump belt and head to the trampoline/playground/upstairs to play with the kids, or run far ahead on a mountain hike, and come find us only if the alarm was going off. He could sleep in other rooms (it works up to 30 feet away). At night, we got more sleep as we only woke up when we had to (or when the traffic/birds/neighbours/fireworks told us to). On the tandem, I would ride with the CGM in my bike shirt pocket and deal with lows by just handing back some gummies or a juice box. 


Other diabetes supplies

Our pharmacy team at Save-On (Vic West) were superstars. They happily ordered extra supplies before the end of 2015 to max out our allowances, took phone calls from us overseas, filled prescriptions right up to the last hour before we left town.
We got two shipments of diabetes supplies sent to us, via our family. One with a 3-month supply of extra sites, sensors, glucagon sent to us at the beginning of Month 3 in Holland (which we didn’t get until Germany, see above). The other was a last minute request for more more Inset II infusion sets, which Amos preferred to the other back-up ones (Comfort Short) we’d brought along. 


Health insurance

We bought travel health insurance through Blue Cross for the whole time we were away. My work health insurance (also Blue Cross) was not enough in case of a real emergency or worse. Researched a bunch of different options and decided to go with the top plan. Cost: about $900 for whole family. No issue that Amos had a pre-existing health condition.   


Illness

We’ve been lucky that Amos has only had one tummy bug, in Austria ( lasted 1 day; roller coaster highs and lows lasted for next 10 days). Didn’t need glucagon, just lots of Gatorade and juice boxes on hand for the party afterwards. 
We were worried about Thailand, and happily surprised to have escaped with nothing more than Amos having a cold. He drank only bottled water. Happily ate street food, but we avoided sketchy stands and seafood and meats and fruit on ice. Used mosquito repellent to avoid dengue fever, and malaria pills as a precaution. 

Ahead of time, we got the usual vaccines to cover the countries on our trip. We also all took the E.coli oral vaccine Ducarol. Diabetes and vomiting are bad friends at the best of times, and we weren’t keen to experience the hospitality of a Thai hospital. 

Probably the biggest risk was during the New Years celebration in Chiang Mai, where you were soaked with river/gutter/defrosted freezer water for 2 days straight in giant water fights in the streets. “KEEP YOUR MOUTH CLOSED” only worked as advice up to a point. I yelled the same advice to Amos as he swam in the Kong river, equally as dodgy. Props to the Ducarol for keeping Amos, and the rest of us, healthy? 

Back-up insulin pumps

I (Kristina) was paranoid about being stuck in some remote Thai outpost with a vomiting child, a broken pump and stolen bags. As mentioned earlier, we (OK…I) overpacked, and over planned. Animas, the pump maker, was great about loaning us a back-up pump for 6.5 months, much longer than the usual 1 month period. In addition to the loaner, we had Amos’ old pump where the warranty had expired, that we carried just in case. One flight to go and still haven’t needed either of the back ups. Let’s keep it that way!


At the beach/ pool

As expected, long soaks in the water led to a lot of infusion set failures. No problem. We had lots of back-ups. To secure the CGM transmitter on his upper arm, Amos used an adult sized velcro wrist band for tendinitis. Worked great. A sun shirt, a la mode in Australia, also helped protect it from the pounding surf.
It was sometimes tricky to keep the diabetes bag cool at the beach, even in the Frio pack, but we tried to shade it as much as possible. We threw out one vial of insulin that we worried had gotten overheated. 
Amos took off his pump while in the water. To protect it from theft – some of these beaches were crooooowded! – we’d put it in a ziplock and bury it under our beach towel, along with wallets and phone.

  
 
Six Month Packing List

We never sat down and counted the exact number of supplies we needed/used for this trip, but this was the monthly approximation we used. We carried an additional month’s supply of everything in our luggage in case bags got lost or stolen.

  

  • 20 infusion sets per month * 6 (only needed 15 per month) 
  • 10 cartridges per month* 6 (only needed 6-7 per month)
  • 4 sensors per month (only needed 2 per month)
  • 500 strips per month (only needed 300 strips)
  • 4 extra pokers 
  • 12 lithium batteries total (used 7)
  • AA 4-6 per month. Bought these on the road.
  • 2 back up glocometres 
  • 2 ketone testers
  • 3 boxes * 10 ketone strips (used none – hooray!)
  • 2 sets of extra pump caps (for battery and infusion cord)
  • 4 watch batteries for glocometer/ ketone tester
  • 300 lancets (used less than 50- is it OK to admit that?)
  • Package of alcohol swabs
  • Cooler for carrying insulin, with ice packs (provided by nursing team – made by Lilly)
  • The usual doctors letter for air travel- would have been helpful to have it translated into the 13 different languages ahead of time. 
  • Armband to keep sensor on while playing in the surf (orthopaedic wrist band, with Velcro adjustments worked well)
  • A cell phone, with alarm clock and flashlight, for night time checks in tents/ mountain hiking huts
  • Tagaderm to keep sensor stuck on
  • Swiss Army knife w scissors for trimming Tagaderm
  • More Dex! It is light, tasty and predictable.
  • Glucagon (we had 2 with us at all times, 6 in total)
  • Anti-nausea pills
  • Charge cord for sensor
  • International adaptor

SHould have brought: cards with phrases to explain diabetes in other languages; more Dex; copies of prescriptions. Unfortunately, Dexcom doesn’t do loaner CGMs but that would have been helpful. We had no back-up if anything went wrong/broke.

In the Daypack

From these supplies, we carried a one-week supply with us everywhere, in trusty Deuter daypack. A make-up bag worked well for keeping supplies semi-organized inside.

  • 2 AA batteries for Ping
  • 1 lithium battery for pump
  • Extra pump cord
  • 2 syringes
  • Extra glocometer
  • Ketone tester + strips
  • 3 infusion sets
  • 1 sensor
  • 2 cartridges
  • 3 containers of strips
  • Tagaderm (pre-cut) 
  • Fruit leather 
  • 2 glucagon
  • Waterproof pocket (sold at outdoors stores) for keeping sensor dry 
  • Extra pump caps
  • Alcohol swaps 
  • Extra watch batteries for glocometer/ ketone tester 
  • 1 zofran pill (powerful anti-vomiting drug)
  • 20-ish lancets 
  • Extra poker
  • alcohol swabs for cleaning CGM transmitter
  • 3 pump pouches (they got verrrry sweaty!)
  • 1 water bottle
  • 4 juice boxes
  • Dex or skittles
  • Snacks: granola bars, applesauce in squeeze pouches, fruit leather etc
  • Sensor 
  • Ping
  • Travel medical insurance card 
  • Also in the daypack: phone, passports, iPad, sunscreen, Benadryl/epipen (for K’s wasps), camera.
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