Breathe In, Breathe Out

The Honeymoon is Never Over August 21, 2012

Filed under: My posts — elanaalfred @ 8:04 pm
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As I write this I am relaxing on the beach in Maine with Eamonn, as the last day of what I am still referring to as our honeymoon dwindles down. I am desperately trying to ignore the looming reality of tomorrow’s 6:30am wake up call, which I think everyone can agree is the most difficult part of a vacation (by the time I am posting this I have survived the wake-up call). On our drive up to Maine, Eamonn and I were sharing the mutual feeling of how our time in Brazil allowed us to press the pause button of our every day lives—stop thinking about the big and trivial concerns and enjoy two full weeks of experiencing a new culture, drinking beers on the beach surrounded by men and women in tiny bathing suits, with just the company of each other. We had an incredible vacation and it truly did live up to all of our expectations. And while we were able to leave our every day lives at home, we are never able to leave cystic fibrosis behind—the thing about having a chronic disease is that if follows you wherever you go.


Traveling with Eamonn was amazing. I cannot say that after two solid weeks of being side-by-side at almost every moment, that I love him even more than I did because I don’t know that that is possible (stop your oohing and awing, or eye rolls).  But my trust, comfort, confidence, and appreciation have escalated more than my words can describe. With my lack of ability to speak even one sentence in Portuguese, I trusted Eamonn to speak for me—on the street, in restaurants and of course while shopping! I was comforted in knowing how much he planned ahead, preparing for anything that might happen.


Eamonn and I knew, and were ecstatic, that in visiting Brazil we would experience many “firsts.”  What we were unaware of was that our visit would also seem to be a “first” for many Brazilians. As described in an earlier post, Eamonn’s 24/7 oxygen in-take invites many looks and stares. It has taken some getting used to, but as Eamonn says, “if you got it, flaunt it!” So upon our arrival in Brazil I was not surprised at the initial stares and looks of pure confusion. I embraced it and laughed it off. But that was only in the Sao Paulo airport. It did not take long, once we arrived in Rio de Janeiro and started walking around, to realize that as we walked down the street counting all of the females in thong bikinis, growing accustomed to that aspect of Brazilian culture, that they were all looking at Eamonn. Not just looking but keeping their eyes on Eamonn as we continued to walk by. I could feel the stares. I could sense the bewilderment. As the days continued and we visited the sites, explored the beaches, shopped in the markets, and moved from city to city, the looks were all consistent. Eamonn’s oxygen machine that he rolls in a small bag made him a spectacle, a site to see for many Brazilians. After a number of days, as a naturally defensive person, my frustration began to boil. I know in my heart that the stares were not malicious or even on purpose—they were looks of unfamiliarity—but it doesn’t make it more comfortable to feel like your husband is on display everywhere he goes. During our second week on the trip, while in Salvador, we went to a folkloric ballet which the New York Times has described as the best in the world. We sat through a 45-minute show full of riveting dance and capoeira, with sounds of incredible music that gives Brazil its unique and colorful culture. The show left me with my mouth wide-open in awe and wanting more! When we left the theater we were welcomed onto the street by fellow theater-goers who quickly turned their attention to Eamonn, the one-man show with tubes in his nostrils! There was only one thing we could do—we both started laughing. I looked at Eamonn with a profound realization and said, “I guess you’re the real show here!” As we were seeing so many amazing things there, Brazilians were also seeing something new, different and fascinating. So you can keep on looking, just don’t be embarrassed when you trip on the street because you aren’t paying attention to where you’re walking!


Eamonn’s oxygen not only caused endless stares, but it also caused flight delays. Well, our flight delays. Flying for us is more of a production than for most people and now we know what to expect when we travel. However, traveling internationally was different and a large chunk of Eamonn’s preparation for the trip was being sure that the airline we primarily flew (Tam) would accept him on each of the flights despite his need for oxygen. Luckily, we were made aware that Tam is more strict than other airlines and that they require many documents to be filled out along with a doctor’s explanation of his medical needs. Eamonn followed through with everything that was needed, made each of us copies of all of his paperwork, and organized it all in folders that we both carried in our carry-ons. Sometimes, what people ask for just isn’t enough. Each of our Tam flights (a total of 4) involved many questions, looks of concern, quadruple checking that he had extra charged batteries for the machine, seat changes to the first row on the plane, and in some cases a personal chauffeur through the airport. In most cases, once we and our fellow passengers were on the plane with seats buckled, the questions had been asked and the flight was prepared for a prompt take-off. Never get too confident, though! For our last Tam flight, flying from Salvador to Sao Paulo, approximately 2 ½ hours, our bags were checked, we went successfully through security, boarded the plane, and got buckled into our seats. Eamonn was never questioned for his oxygen—until then. A man, speaking only Portugueuse, approached Eamonn asking to see the “documentos.” I will not bore you with the details (or describe Eamonn’s tone at times speaking to the flight attendants) but after being questioned by all of the flight attendants about his batteries, an announcement from the pilot explaining that the hold up was to ensure the safety of a passenger on board that requires oxygen (at that point I knew enough Portugeuse to understand), Eamonn being asked to show his extra batteries which were in the overhead compartment, and a half hour delay, everyone was content and ready to get in the air. Of course I have left out the part about how I scolded the flight attendant for making Eamonn more of a spectacle than he already is, but once Eamonn was settled back in his seat we enjoyed a good laugh. There’s just nothing else to do!


Everyone has asked me the highlight of the trip and that is a very tough question to answer. But without too much thought, my most memorable moment was in Salvador, listening to Eamonn play capoeira music with a renowned mestre (master) on his

Eamonn with the mestre

newly bought and hand-made (by the mestre) pandeiro (tambourine in my terminology). He lit up like a kid in a candy store and I will never forget that face. That moment was absolutely worth all of the stares, questions, and flight delays. Just slightly behind that moment was when Eamonn “played” a capoeira performer in the main square of Salvador. I was lucky to see Eamonn in a capoeira show once in Chicago, but since being involved in his group in Chicago and getting sicker he has, for the most part, not been able to do capoeira. As we were watching the performers I could just see how much he missed it. We walked away briefly, and then he looked at me and told me he had to go back and that he would regret it if he didn’t try to play just a little. So we went back to the group and for the second time I got to watch Eamonn do capoeira. It was one of those moments that I was overwhelmed with pride and love for him–I know how hard losing this passion of his has been on him but seeing his smile after catching his breath, I knew he felt a little more like his old self.  


Eamonn and I will certainly never forget our vacation together in Brazil. We will forever cherish the laughs we had, try to replicate the food we ate, play music on Eamonn’s new pandeiro, enjoy the new pieces of art in our living room and be reminded of our memories with the over 800 pictures we have! For 2 weeks we were able to enjoy a care-free get-away together, without any doctor’s appointments, hassles by the CVS pharmacy or fights over the phone with health insurance companies. It was all left behind. And despite that CF is always with us wherever we venture to, it will not knock us down. We have each other to hold us up.



Going on Our CF’n Honeymoon July 31, 2012

Filed under: My posts — elanaalfred @ 9:39 pm
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A few months ago I wrote a post about the difficulties that Eamonn and I were having in choosing a honeymoon destination given his health concerns and realities. We had considered a number of options, which were, for the most part, not conducive to the restrictions we had because of CF and the limitations that meant for travel. One of the places I included was Brazil, a dream vacation particularly for Eamonn. In Brazil’s summer months, our winter, the weather is hot and humid making it difficult to breathe, which is obviously not an option for Eamonn. However, we decided to take our vacation during our summer making it Brazil’s winter. So I am very happy to update you all and tell you, in case you haven’t guessed by now, that tomorrow Eamonn and I leave for our honeymoon to Brazil!


We will be traveling for two weeks visiting Rio De Janeiro, Paraty, Salvador and Praia Do Forte—enjoy figuring out the pronunciation! After almost five years of being together, nine months of which we have been married, we are finally getting to go on a dream vacation that I don’t think either one of us imagined we would get to do considering the changes of the past couple years. We have had many conversations about this trip, as you can imagine, and most of them include the topic of how lucky we are to have this kind of opportunity. Together we have a couple years full of many ups and downs and I will be blunt in saying that we deserve a vacation.  And going to Brazil, a place that Eamonn has talked about visiting since I met him five years ago is literally a dream come true for both of us.


Now, with all this said, to get to this point has been a lot of work. As I said in my previous post, planning a vacation is not easy and it involves many details. Planning a vacation for someone with serious health considerations is a whole other story. We booked our trip about 2-3 months ago and since then have been planning for it. But we still don’t know all of the sites we want to see, where the best restaurants are, or what types of daily activities we should be doing. The planning that we have been doing has mostly revolved around being absolutely sure that Eamonn has every detail of medical-related business taken care of, planned for, and, should anything at all happen while in Brazil, knowing how to react (and yes, we have our hotels, transportation, and flights all set as well). I have always trusted Eamonn and have pure confidence that he knows best how to take care of himself, but if I ever needed affirmation of that, planning this trip has certainly proven it. He has done a remarkable job in being sure that every small detail for him to stay healthy on this trip is taken care of. He has been extremely organized and efficient, all while staying calm and seemingly unstressed.


Before this trip I had almost no idea of the hassle that this type of vacation would be for someone with cystic fibrosis, or any other disease, so I wanted to give everyone an idea of what Eamonn has been doing over the past 2-3 months.  Here are the details in Eamonn’s own words:


A sneak peak into packing

Before doing any planning, I had to discuss our travel plans with both my regular pulmonologist and my transplant team to see if they would approve.  Once we got the green light from them, the real work began.

First, I had to check the voltage of Brazil’s electrical outlets.  If my machines were incompatible, the trip would be much less doable.  I needed to get a different air compressor machine for taking inhaled medications, as my normal one is only meant for our voltage range.  This simple step actually took a few months and the combined effort of my doctors and me.  I also had to find out what type of electrical outlets are used in Brazil and get adapters so that all this machinery will work.

Next, I had to get contact information for CF doctors in Brazil in case of an emergency.  While this part only required sending an email on my part and following up, this task actually took my doctor a few months to finalize.

Patients on oxygen are required to use an oxygen concentrator, which is safer than bringing oxygen tanks on an airplane.  However, as these devices are relatively new and expensive, my oxygen supply company does not carry them, requiring me to arrange rental with a third party.  In order to bring the oxygen concentrator on an international flight, I had to ask our travel agent to speak with the airline to find out what the procedure is, then contact the airline myself to get directions to access the necessary paperwork, which both I and my doctor had to fill out, and which then had to be scanned and sent to the airline. 

To go through customs, I needed to make sure I have hard copies of all my prescriptions, which required a bit of calling and following up with nurses at the CF clinic.  I also had to inventory all my medications and refill any necessary to ensure an adequate supply for our trip.  Additionally, I had to fill new prescriptions for antibiotics to take with me in case I get sick. 

Many of these arrangements require an endless succession of phone calls, emails and follow-ups with doctors, nurses, insurance companies and medical suppliers.  Over the course of several months I have spent countless hours making these arrangements in addition to the normal work that goes into planning an international trip.  But tomorrow, it will all pay off!


We are finally ready and almost packed for our first vacation together! No matter where we decided to go on our honeymoon it would be the best vacation of our lives, but I am ecstatic and honored that I will be with Eamonn as he lives his dream vacation!