Logistics
We brought with us one small carry-on, duffle bag or backpack per person. In addition, we had a 2,000 inch3 backpack for diabetes supplies and one tiny sling bag, always in my son’s possession.
For pump and CGM gear, we brought a bit more than twice as many supplies as we expected to use. We also brought a spare iPhone for my son, and we were, of course, carrying 2 follow phones. We did not bring a spare PDM, but we had an extra hand glucose meter. We also had about 20,000mAh of battery banks, that were used extensively, along with several chargers, cables and spares, and many Euro-US adaptor plugs. One accessory that came very handy was a US 10-ft extension cord, because power, when available, was often a single outlet per room: it gave us flexible access and the capacity to plug in many devices without more adaptors.
We brought about three times more insulin than we needed, divided into two thermoses. We also brought twice as much basal insulin as we might use, although we pump, in case we had pump failures. Each thermos had both fast-acting and basal insulin, and 5-6 frozen iceballs. The iceballs turned into thermal moderators in fridges when we actually had access to them (hardly ever).
In Europe we travel with a med kit and about 25 different types of drugs in a small Pelikan case. We took our med kit, but only a small selection of drugs with us (for portability). It was sufficient for everything except for one incident.
We brought 6 lbs of fast candy (Skittles). We normally use milk and a sippy cup for night lows. We had no access to milk most of the trip, so we bought 2 kgs of hard sugar that we took with us, and made bottles of cold sweetened tea that had 5 grams/oz of sugar, which we then dispensed at night with the usual sippy cup. We weighed the liquid to dispense it (33 grams per oz) with a portable digital scale that we brought along. We also carried clementines and bananas for daytime lows, that we purchased on the go. The bananas crushed often and were a pain to use, but the clems were great at 9g/fruit (not that they were always easy to find: we once had to cover 150km to find fruits to buy…).
We carried 6 days of clothes. We had 4-5 layers along. We used all of our layers, even winter jackets we were not sure were needed.
Using a driver was very helpful to logistics, since it allowed us to leave luggage in the car whenever we were walking around. We remained in Berber and Tuareg country all the time on purpose, and felt safe all the time, although we drove a few miles away from where two Western tourists had their throat cut a few days before we were in the neighborhood—I consider it to have been a very unusual event.
Outcomes and incidents
Basal needs remained remarkably stable all the way through. On the other hand, patterns and ratios widely varied. We had a very hard time evaluating meal carbs, and meals were, in general, carbier than we normally eat. We ate only local food. Most meals ended with post-dinner carb peaks due to poor estimation, although, towards the end, we were able to do a better job. Puberty peaks were different from home, and happened at different times. Ratios were widely different, with CR going from a home 1:35 to a road 1:12 (with many changes).
We had a pump site infection that gave us trouble, and required antibiotics. We were very lucky because we were near a small village with a doctor. Our guide helped us a lot there. The nurse did not want to take our boy, but wanted us to ambulance him to a bigger town 6 hours away. Our driver told her that she had to take him by law even though he was a foreigner, and that he would bring on the police if she did not. Finally, out of sheer weariness, she called on the doctor for the boy. We had had a site infection a year ago when we had used Keflex. We discussed suitable antibiotics with the doctor, and she gave us the same type of antibiotic. The office would not let us pay for anything, either care or medicine. I used a pen to mark the infection edge every day, to monitor success, in case it was an MRSA. After 2.5 days of antibiotic use, the infection started waning, and the angry red turned more normal. After 5 days it looked pretty cured, and the treatment was 7 days long, after which nothing remained.
In terms of weather, we never had any dangerous heat (for insulin, or for us). It was cold at night most days. In the deep desert, it ended up being below freezing a couple of nights, in particular when we were camping in tents—but it never was bad enough that we had to sleep with the thermoses. We never had any insulin conservation worries with our regular thermos logistics. A couple of nights, we had access to fridges, but they looked so old that we decided they were more dangerous than leaving the insulin outside in its thermoses.
We had a hard time with dehydration: we had to drink enormous amounts of water, and the cold was deceiving. The first few days, we had bad CGM signals due to dehydration. The later part of the trip was better, but we were never far from losing sensor signal due to dehydration. We probably lost an extra sensor for that reason.
Finally, we hardly had any wifi anywhere we were. We slept in houses, rustic hotels, encampments and guest houses. Many of these places only had generator power, from sunset to about 11pm. There were four of us: my wife and I, my T1D son, and my college son. We ended up dividing sleeping rooms in a different way: my T1D son and I slept in one room, and I used his phone as the CGM alert source. My wife and my other son slept in another space or room. Since we had very little broadband, if at all, we largely did not use our follow apps for the whole trip—but night was the only concern, and we made it work.
We used bottled water all the way through. We avoided raw vegetables. We did not run into any digestive problems during the trip, but, upon coming back to Spain, my wife and I had a very hard 4 days, including significant fever. We were lucky it did not happen earlier in the trip. We still don’t quite know exactly what caused it—but of course we understand that it must have been a food issue, likely bacterial contamination.
In the end, we had rough food and accommodations, and it was just what we wanted. Our logistics worked well. We never ran short of anything. We had no major breakage. we dealt well with all emergencies that developed. We came back with half our supplies left. Except for the site infection we never felt worried. It was a great trip and we hope to go back some time!