You Can't Take a Vacation From Cystic Fibrosis

The trip to Tahoe went quite well.  Froze my non existent rear off (car therastat read ICEY), soaked in a hotspring, did some shopping, and came up with the idea for this post.

While packing for my trip, I went through the normal frustration of what I should take, what I should leave behind, and how am I going to fit it all in my bag.  I'm not talking about clothes, makeup, shoes, or any of that other girly stuff.  Those who know me know that I don't wear makeup (too much time spent in the morning doing treatments, not enough time to apply makeup), t-shirt and jeans are my main attire, and I strictly wear my Etnies (though for Tahoe I did pack my snow boots).  So what am I talking about then?  I'm talking about all my CF supplies.

Just because I go on vacation doesn't mean CF does.  So all the treatments I do at home, I still have to do while I'm out.  Skipping a treatment is not an option. 

So there I was with all my meds spread out on my bed.  I had devied them into two piles 1) The necessary meds and 2) The just in case meds. 

The necessary meds are the medications that I cannot skip.  They may be a hassle and some take a huge chunk out of my day, but they keep me out of the hospital.  These medications consist of my enzymes, multiple vitamins, prednisone, singulair, prevacid, voraconozole, zithromax, fosamax, advair, spiriva, pulmozyme, albuterol, and hypertonic saline. 

Once I figure out what is necessary, I have to calculate how much I'm going to need for the trip.  I don't have room to pack all my pill bottles and boxes of vials.  The pills are pretty easy.  Most, I only take once or twice a day and I have a pill holder that holds enough pills for once week.  So I sort all the pills out by day and put them in their spot of the pill box.  Then it's onto the inhaled medications.

Five of my meds are for inhalation.  Some I only take once a day.  Others, I take three times a day.  Since I was going to be gone for at least seven days, that's a lot of vials (three of them come in liquid vials) to be packing.  That turns out to be 42 vials plus I threw in a couple of extra days' worth just in case something comes up and I didn't get home in the time allotted.  And because these medications are in liquid form and I have to inhale them, I have to pack a special compressor and the necessary nebulizers (there are three of them) that will turn the liquid into a mist that I can inhale. 

Luckily, I have a portable compressor that takes up less room in my bag than the compressor I used around the house.  The portable also has a battery that lasts for about two inhaled medications.  I can't do all my meds in a row with the portable because the motor over heats and will shut off automatically.  So I have to take a break between meds, get something to drink, brush my teeth, anything until the motor cools off.  The portable is fine for on the go, but a hassle for daily use.

The two other inhaled medications come in a tablet that gets crushed in a device and then the powder is inhaled.  So the devices have to be packed and so do the tablets.

Now it's on to the Just in Case pile.  The meds in that pile consist of a prescription pain killers for uncontrollable pain, benadryl for allergic reactions, advil for controllable pain, extra inhaler, TOBI (inhaled tobramycin) for lung infections, and hydrocortisone cream for allergic reactions.  Actually, that's a pretty small pile, except for the TOBI which comes in a large box and requires another nebulizer.  So I pack a little of each.  I wasn't in need of them at the time and figured I wouldn't need them for the whole trip.

Since I had decided which meds to pack and how much, now I needed to pack them in a way that they wouldn't lose potency.  TOBI and Pulmozyme require refridgeration.  So I have to store them in one of those artic lunchbags with a couple of icepacks before putting them into my bag.

Now all my my medications were packed as well as their delivery devices.  But I wasn't done.  I also had to bring something that would allow me to get all that mucous out of my lungs.  I couldn't let it build up for seven days.  At home I use a device called the VEST.  It's this vest that you put on and it shakes you, in turn shaking the mucous out of the lungs.  I couldn't very well pack the VEST.  It weighs about 40 lbs.  And while there is a portable version available, I haven't been able to convince my insurance to pay for it and I do not have access to the funds needed for such an item.  Luckily, for this trip the decision was an easy one.  My mother was coming along and she knows how to do manual CPT (clapping the hands on the chest to loosen up mucous).  So the VEST got to stay at home.

I managed to fit all this stuff into one large backpack.  My clothes and hygiene items went into a second bag.  Threw on my snow boots and a heavy jacket and I was ready for Tahoe.