Our Leap for the Pump

"Just go for It!"

My wife and I were sitting in the office of a clinical nurse at the Alberta Children’s Hospital, Kleenex in hand.  The nurse’s name was Donna and she had had type-1 diabetes for thirty years; since she was a little girl.  Our heads were spinning; we had just received the same diagnosis for our 3-year old son.   

My wife and I had been planning a 5-year world wide sailing excursion for our family since 1993, when in September 1999, Gerrit was diagnosed with juvenile diabetes.   We were devastated by the news.  Among many other things, our sailing plans were cast into immediate doubt.  But at that very low point Donna’s four simple words –  “just go for it” –  gave us the resolve and courage to pick ourselves up and continue with our sailing plans.

We discussed our travel plans with our diabetic care team, researched the world-wide availability of insulin and diabetic supplies, worked extensively with insulin adjustment, and in June 2001, bought a 40’ sailboat named TIOGA.  Our multi-year sailing adventure began June 2002; myself, Chris, my wife, Sheila, and our two sons Joel (8) and Gerrit (6).   

Sailing and Injection Therapy Didn’t Mix Well

Last summer, when we bought TIOGA, we managed Gerrit’s diabetes with 3 to 4 injections a day.   We kept and sailed our boat on the west coast, in and around the Canadian Gulf Islands and U.S. San Juan Islands.  The thing about sailing is that your schedule varies a lot.  Your schedule and the safety of your vessel and family is dependent on tides and currents, the opportunity to enter or leave a port-of-call or anchorage, weather forecasts, current weather conditions, wind and waves ….  And just because it was time for a meal or snack or to test Gerrit’s blood sugars, didn’t mean that Sheila or I were available to do it.  The results were undesirable highs and lows at the worst possible time, when we both needed to be on deck.  Then there was the problem of seasickness to which Gerrit is susceptible.  God forbid he would get sick just as some background insulin was peaking. 

The Leap for the Pump

If we are to succeed on our sailing trip, our diabetes management goal must be independent self-management, and we were determined to improve our odds.  By late fall 2001, it had become apparent to us that injection therapy would pose a challenge and likely limit our experiences in travel. 

In October 2001, we attended a diabetes conference and, for the first time, became aware of the possibilities of insulin pump therapy.  After reading extensively on pump therapy, discussing the pump option with Gerrit and his brother Joel and parents of other insulin pumping kids, and reviewing our health insurance plan, we approached our endocrinologist – was pumping the solution we were looking for?

It appeared so … but there was a snag.  Given the newness of insulin pump therapy in the Canadian medical system and the lack of resources, there was a two-year waiting list for a pump start at our clinic, one of the most  progressive pump therapy clinics in Canada, and nowhere else to turn with such short notice!  Not good when you’re leaving on a sailing trip in 6 months.  But we now had an idea of what pumping could do for our family and we weren’t giving up that easily!

The next decision we had to make was relatively easy. Though considered bold by many, for those who know us and our resolve, it wasn’t a surprising move.   Faced with the prospect of accepting injection therapy for the duration of our trip and the challenges already mentioned or a home start on the pump without clinical resources but with the associated benefits soon to follow, we chose the latter. 

It’s important to note that, in choosing to continue with our sailing trip as planned, we had already accepted the responsibility to manage our son’s diabetes outside the normal reach of any healthcare system.  Regardless of the type of insulin therapy selected, the most important factor was that we know as much as possible about diabetes and its management and were capable of learning and adapting.  Prior to deciding to home start on the pump, we had already achieved the following:

v        Were very motivated to switch;

v        Had realistic expectations – pumping is not a panacea;

v        Successfully managed diabetes with multiple daily injections (HbA_1C  around 0.075)

v        Tested blood glucose 10 to 12 times per day, interpreted the readings and adjusted our own insulin;

v        Could carbohydrate count effectively;

v        Had the financial capability to cover the expense;

v        Were in the correct psychological and emotional state to try; and

v        Had demonstrated to our endocrine team our intellectual, physical, and technical abilities to succeed with the pump.

The pump start went well.  And, to date, the Animas R1000 has been a stellar choice.

Pre-departure Preparations (or Out of the Kettle and into the Frying Pan)

In the months leading up to our departure date, there were so many things for us to do.  We had to sell our house and vehicles, streamline our money matters, prepare the boat for ocean passages, store our personal effects, prepare to home school the kids, assemble a comprehensive medical kit, finish up at work, get our travel immunizations (now those take your blood sugars for a ride!), and, of course, make sure we could manage diabetes.  Here’s a sample from that to-do list:

v        Relearn how to adjust insulin, now with a pump

v        Obtain letters from Gerrit’s endocrinologist in 4 different languages explaining his condition and supply needs

v        Arrange to have diabetic supplies delivered to us where and when required

v        Set up equipment for long distance radio contact and phone patches (HAM/SSB radio)

v        Set up internet e-mail between our boat and Gerrit’s diabetic team via the HAM radio

v        Set up diabetic health care records that we would maintain and share with clinics along the way

v        Arrange for mail-in HbA_1C tests

v        Obtain the best in seasickness medication

v        Prepare the boat to discharge static electricity and avoid lightening strikes, neither of which are any good for electronics  or safety.

v        Establish an appropriate DKA prevention protocol

v        Learn how to set up an intravenous in the event of dehydration

v        Learn the low-dose glucagon regimen for managing sick days

v        Join the International Association for Medical Assistance to Travellers IAMAT (English speaking doctors world-wide)

v        Obtain travel health insurance

v        Obtain a backup insulin pump

The Goal is to Meet Your Goals

And so here we are.  We now live aboard a 40’ sailboat with our kids.  Our “family car” is an inflatable Polaris with a 15 HP outboard motor.   We undertook our first major ocean passage from Vancouver Island to San Francisco in late August 2002 and our second from San Diego to Cabo San Lucas, Mexico in early November.  Beyond that, it’s the Panama Canal, the NW Caribbean, Florida, Bahamas, Bermuda, Europe, the Mediterranean, and South America.  We have a whole lot to learn about a simpler kind of life.  It won’t be without its challenges, diabetes being but one of many.   Gerrit loves his pump and so do Joel, Sheila and I.  It’s made a profound difference to our family’s quality of life already and the best, we hope, is yet to come.  The nurse was right: “Just go for it!”

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