Breathe In, Breathe Out

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!


How I Became A Weight Watcher July 17, 2012

Filed under: My posts — elanaalfred @ 2:19 pm
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When was the last time that you rummaged through your closet to get rid of the clothes you no longer wear that just take up needed space?


I’m sure this will shock my mother, but I try to do this at each season transition (you would not guess this from the look of my closets in Worcester). For those of you who know me well, I don’t have to tell you how much I love clothes and building my wardrobe, despite how irresponsible I can be about it.  As much as I love the clothes I have bought, I also love sorting through them and deciding what to give away when I feel I have made as much use of them as I can. Lately, however, giving away clothes is not always about choice.


This past spring I actually did not do my usual closet clean-out. I didn’t have to. Why, you ask? Well, it occurred to me that I had been getting rid of clothes sporadically over the past months because they simply no longer fit me. I am not complaining or saying I’m fat, but this is a fact. Giving away clothes has not been so much about what I no longer choose to wear, but more about the clothes not being right for me anymore. As I thought about the clothes I had in bags to bring to the local Goodwill, it occurred to me that most of them were clothes from before or while I was dating Eamonn (you may be thinking that it was time for me to get rid of them anyway!). It did not take long for things to click.


Weight-gain is a large component of having cystic fibrosis. Many CF patients have pancreatic insufficiency which means that they do not digest food properly, resulting in being very thin (I’m sure some of us would, at times, not mind having this issue). Case in point, Eamonn. For those of you who know him or have at least met him, he is rather small (funny for me because before dating him I used to be attracted to men with guts). Being that he is really skinny, gaining weight is critical to staying healthy. In fact, now that he is on the lung transplant list, there is even greater pressure to increase his weight specifically to ensure a better recovery, post transplant.


What does this mean for me? I think you guessed it—his weight gain has meant my weight gain. To be fair, I cannot blame CF entirely for how I have been taking care of my body and what I choose to consume. However, can you blame me for wanting to cook and eat dinner with my husband, even if this means cooking and eating fat and calorie-rich meals? Almost every meal that Eamonn eats is very intentional, meaning that he has to be sure that he has the proper nutrients and that he is taking in a lot of calories. To provide perspective, he drinks two, sometimes three, weight-gain shakes a day each containing 1,000 calories. I happen to think that this is a perk of CF because those milkshakes are really tasty! All of our dinners must have plenty of fat and until now it did not really occur to me how much this would affect my dietary habits as well. We also eat a lot of carbs: pasta, rice, and potatoes, are our staples. In one form or another, our largest meal of the day is loaded with calories, fat and carbs—and for anyone who has ever dieted before you know that fat and carbs are the first to go when losing weight.

The foods we eat!

Up until now, I honestly have paid little attention to my diet. My focus has always been on making sure that Eamonn is eating right and supporting his efforts to gain as much weight as he can while staying healthy (side note: because of CF he also has diabetes, making this far more complicated and challenging than eating a lot of junky, fatty food). However, though this remains my focus and priority, I am also trying to ensure my own good dietary health.  Along with exercising more, I have started to eat a healthier, well-balanced diet.  This does mean that Eamonn and I oftentimes prepare separate dinners for ourselves.  But as long as we enjoy each other’s company, dancing in the kitchen while cooking, it doesn’t actually matter what we’re making!


Last month, as I was on my routine walk to my office, I got a call from Eamonn. He had just gotten out of a follow-up doctor’s appointment and the first thing he told me was that he gained two pounds, making his weight a record high! I could not stop smiling ear-to-ear—I would take a wardrobe full of tight clothes if it means that Eamonn is gaining the weight he needs to be healthy.  I’ll tell you this,  there is no better sight than seeing my husband’s gut hanging over his bathing suit, sitting at the beach in the summer!