Still Miles to Go

Wednesday morning we set off for our first big adventure in nearly a year. The destination? Chicago for the 2011 UMDF Symposium. The goal is to learn more about mitochondrial disease (you know, that pesky neurometabolic disorder that we can’t seem to shake) and the current treatments and research as well as meet up with members of the mito community from across the country. We’re pretty stoked to say the least.

But it certainly wasn’t easy to get here. First, we had to apply to a bunch of grants to pay for the trip. You see, Keith’s still a grad student and my work hours are few and variable; we just don’t have the kind of money necessary for this kind of trip – or any kind of trip for that matter. Luckily, we were able to get a good chunk of it covered.

After that, we had to coordinate all the medical mess. Because I have numerous medical interventions intended to keep me healthy and happy, nothing is ever exactly “easy.” For one, I’m on 24/7 intravenous infusions to provide nutrition, keep my autonomic nervous system content, and my blood glucose stable. The infusion bags are heavy, bulky, and many. And they have to be refrigerated or the contents will become denatured and useless. Bummer.

So the trick was getting that nutrition (along with my additional central line supplies, tubie supplies, medications, and other medical necessities – oh, and clothing, toiletries, and supplies for True, my service dog) packed and to Chicago quickly, conveniently, and relatively kindly to my poor husband’s back. We could technically carry it all on the flight, but there are only two of us, and as I mentioned, the infusion bags are heavy, bulky, and many. Our next thought was to have the infusion center courier the materials from their local Chicago branch. But alas, MassHealth (for which we are incredibly grateful) wouldn’t cover it. And since my supplies cost somewhere around $1000 per day, there was no way we could even fathom covering it. Luckily, Coram (my amazing infusion supply company) had a solution. They would pack the 99 lbs. (~45 kg) of supplies for over-night shipping. Although they physically couldn’t ship them for liability reasons, they dropped them off on Tuesday morning packed and with pre-paid UPS slips – which Coram even paid for! – and Keith would just have to drop them off to be shipped to the hotel.

But, as I mentioned, we still had numerous other medical supplies to pack that still had to be carried with us (in addition to a day’s supply of infusions, just in case). I could go through it all that we had to organize, but I think a picture is worth 1000 words. And quite literally in this case:

In addition to mailing 99 lbs of medical supplies ahead to Chicago, we brought a full carry-on filled with other necessary supplies: (1) Spare dressing change; (2) Enteral and IV pumps (two of three); (3) Additional IV infusion supplies; (4) 2 days of TPN/fluids "just in case"; (5) Self-cathing supplies; (6) Tubie supplies; (7) Emergency Bag (Epipens, Glucagon, Benadryl, inhaler, etc.); (8) Nebulizer; (9) Tubie bags; (10) daily medications; (11) Mito cocktail; (12) Tummy meds; (13) Cooler for refrigerated components

We have dubbed this picture “This is how we roll;” or “Why we don’t travel more frequently.”

Our baggage (all was carry-on, except for the black duffel) and the three boxes filled with infusion equipment that mailed ahead. We will only be in Chicago about four full days

It’s difficult to explain all that goes into a simple 5-day trip. Currently, we’re in the middle of planning a trip home to California (gasp!), but because we’re hoping to stay longer, we have to deal with many other concerns, including weekly dressing changes, blood draws, and coordinating delivery of a second week’s infusion supplies when the supplies are only delivered one week at a time. We also have to recognized the reality of my medical fragility in that I’ve spent over a third of the last six months in-patient. Although we are unendingly grateful for MassHealth (Massachusetts state Medicaid), it is limited; most pertinently, they only cover emergency care outside the state, not the routine care that keeps me from needing aforementioned emergency care.

But right now, we’re trying not to think about all of this. Instead, we’re trying to live for the day and thoroughly enjoy ourselves while in Chicago. After all, this isn’t just a routine mito symposium; we’ll also be celebrating our 3 year anniversary a few days early. 🙂