Saturday, August 6, 2011

Back from Peru and sharing our CF moments while traveling overseas...

I haven't posted anything since our 65 Roses countdown project ended on May 20th. After Great Strides I got busy with lots of work and getting ready for our trip to Peru.

Yes, I took the kids to Peru for a full month. Jeff joined us for 10 days. Going away for 30 days does take a lot of planning, making sure there's enough money to cover bills and to have during our travels; packing, scheduling tours, etc. are what everyone does when they travel. Then you add CF into the mix and boy is there a lot more planning needed.

Because we'd be gone for a full month, I had to make sure I'd have enough CF medications while we were there. Our refills are due around the 3rd week of the month, so I had to call our insurance company to make sure they would okay a 2 month refill. Luckily they did. I spoke with the pharmacy as well and all was set. Two months worth of miralax, advair, zithro, singular, albuterol, urso, abdeks, and pulmozyme were in check. I had one carry on strictly for meds and vitamins and one carry on for her vest and compressor.

I was prepared to be pulled aside during the security check and sure enough I was. I prepared the kids for this too, so they wouldn't be scared why we were asked to step aside and go with the TSA officer to look through our bags. I had all my paperwork in order...prior to leaving I had the hospital write a note on their letterhead, stating why Andrea needed all the things we were bringing to Peru. They also made a list of all her prescribed and over the counter meds she's on. I was prepared for everything except for the personal question the TSA officer asked..."bless your heart, how do you handle all of this? I have a hard enough time packing my babies diaper bag." I don't know why that caught me off guard. I guess it was the anxiety of traveling and I hadn't slept a lot...but I could barely answer her because I got choked up. I actually thought to myself "ya, how the hell do I do all of this?" I composed myself and gave her the "you gotta do what you gotta do" answer. I was glad to just be done with the bag check and get going to our gate.

Traveling with all the carry on bags was a lot of work. When I purchased the ticket I stated we'd have medical equipment with us and this actually helped a lot. The attendants checking our tickets knew of this and we were allowed to board before everyone else and get settled. It makes me uncomfortable to have people waiting in line on the plane while I put my carry ons overhead, so to do this calmly without a line of 20 people behind me helped a lot.

Once we arrived in Peru, it was time to unpack all the CF things and put them away, and find a place to keep the vest and compressor. My mom's place felt like home so this wasn't too bad. I had bought some transformers because the electricity voltage is a lot higher there, but what I bought could not be used for large items like the vest and compressor. Luckily my mom had one transformer we could use, but only one. So I used that one for the compressor so Andrea could do her pulmozyme inhalations, while I manually pounded her back during the 7-8 minutes it takes for her to inhale the pulmozyme. After she was done with that, I plugged the vest into the transformer and she finished her session using the vest machine. We eventually bought another transformer so I wouldn't have to pound her back by hand every night.

Traveling with pulmozyme can be tricky. It must be refrigerated and not exposed to sunlight, but it can be kept at room temperature as long as it's not more than 24 hours. I did have an ice bag I wrapped the meds in while traveling from the US to Peru, but when I traveled within Peru I would just pack it without the ice pack and as soon as we arrived at our destination I would place it in a fridge. This meant asking the hotel receptionist to place it in the kitchen of the hotel, because our hotel rooms in Peru did not come with an individual mini fridge. Cleaning the nebulizer was interesting as well. We started using the sterilization bags recommended by our CF clinic, which one places a small amount of water in the bag along with the nebs, then you just nuke it for 1-1/2 minutes and it's clean. But in Peru the water is not potable, so I had to make sure I had bottles of water to place in the bag with the neb, and get permission to use the microwave in the hotel kitchen as well. If there were no microwaves, then I'd have to get the okay to boil the neb. Luckily everywhere we stayed went above and beyond to accommodate our needs.

Jeff manually doing CPT while Andrea does her inhalation treatment of Pulmozyme
My darling husband helped me pack our things when we went to visit Cuzco. He was in charge of the vest and compressor. Our first night in Cuzco, as I went to unpack the vest and compressor, everything was there except the actual vest Andrea must wear to do the chest physiotherapy (CPT). I was fuming, but calmed down and nicely told Jeff that he would have to do the CPT manually during the entire trip in the "city of the Inkas". Five days of Andrea being manually pounded on her back and chest, Jeff was tired but did an excellent job. However, on day two of our trip in Cuzco I plugged the compressor into the wrong transformer and POOF the compressor "blew". We had just poured the pulmozyme into the neb and the tour guide was coming in two hours to pick us up for that days tour. For those of you who know pulmozyme, you know that that one dosage of liquid is worth almost $100 bucks. Off I went to the front desk and explained our problem. They called a nearby clinic and sure enough they said they had compressor we could use. Off we hurried to the clinic, after telling the rest of our traveling party the problem. We get to the clinic and there's no compressor! They had an oxygen type of tank machine and I had no idea how we could use that. The doctor on call had to evaluate Andrea (thank goodness for all the paperwork I brought with me describing her disease and medications), then he called a pulmo specialist and with the help of that doctor they were able to switch something around with the oxygen tank and it worked perfectly for the nebulization treatment. The doctor was interested in Andrea and asked a lot of questions. He was amazed at how well she looked and congratulated Jeff and I for our healthy daughter. We went back to the clinic two more times for her nightly CF routine and it ended up costing approximately $30 worth for the use of their "compressor".

At the O2 Clinica in Cuzco - Peru waiting to do an inhalation treatment
Andrea was amazed at how calm I was. She even asked me how I could stay calm and I answered, "I have to stay calm Andrea, because if I don't what would happen?" Andrea replied "you'll feel awful?" "Exactly!" I said "and I don't want to feel awful, so I choose to stay calm instead." Without knowing, this was a valuable lesson for her and for me. While maintaining calm, I was actually able to ask the right questions and provide the help my child needed to keep her going with her CF needs. I was a little concerned with my family waiting for us, our tour started over an hour late, but everyone was very understanding and our day ended up being a fabulous one.

Our trip to Peru was a trip of a lifetime. We enjoyed our full month spending time with family, visiting magical places like Machupicchu and Tarapoto, enjoying the beauty that nature gives us and eating fresh healthy food daily! But the best thing about this trip was the lesson Andrea got out of it...that despite having CF she is capable of traveling the world while keeping up with her CF protocol. That CF doesn't have to take control of her life...she's in charge and she alone has the right to live life to the fullest!

David and Andrea at one of the 7 wonders of the world: Machupicchu - Peru

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