Breathe In, Breathe Out

5 Star Hotel February 27, 2012

Filed under: My posts — elanaalfred @ 2:22 am

Imagine this: a vacation spot where you’re guaranteed a room at the top of a high-rise overlooking a beautiful city, 24/7 room service–in fact, the room comes with a buzzer to call for the staff, bringing an attendant to your door within 30 seconds. Free movies to watch at any time, unlimited amounts of food and drinks, and exercise equipment delivered right to your room. And, you don’t even need to make a reservation in advance!

This place does exist and it has become our get-away, usually during Eamonn’s school vacation times. So where is this unheard of secret spot? You guessed it- Brigham and Women’s Hospital located right here in Boston!

Since Eamonn has lived in Boston (as a post-college grad) we have “vacationed” here 5 times, last weekend being the most recent. Though the description is all true, don’t be fooled. It’s not as magical and glamorous as it sounds. However, the Brigham has jokingly become our “home away from home.” Despite hating being there for many reasons, most obvious being that it means Eamonn is sick, we actually find ourselves relaxing, having significant quality time together, and simply enjoying each other’s company (we also love visitors!). Our visits have included dance parties; watching movies that we otherwise would have never seen; a great excuse for Chinese take-out; learning new games to play on the iPad, such as Risk, which I just learned; meeting so many kind, helpful nurses that all love Eamonn; getting new socks, (you know the hospital ones with the grips at the bottom) which has meant that Eamonn has not had to buy his own socks for a very long time and unstoppable laughter.

I often get thrown off when Eamonn is admitted to the hospital—it’s incredibly unsettling and always a reminder of reality. CF is like an ex-relationship—it shows up just when you’re back on your feet, feeling better, and thinking you are ready to move on. It knows exactly the best timing to remind you that it’s still a part of your life even when things seem so much better. But sometimes Eamonn and I need those reminders—to not take each day for granted, especially when everything starts to feel so “normal.”

Someday, hopefully soon, Eamonn and I will go on a vacation that does not include nurses, doctors and an emergency room, and where he’ll have the freedom to come and go as he pleases. But it doesn’t really matter where we are as long as we have fun together and remember to keep laughing! For now we hope to stay out of any hospital—on that note, this past weekend marked 1 year since Eamonn was last admitted for a serious CF exacerbation (his most recent admission was due to a health scare that required  observation). So here’s to many more years away from Hotel Brigham, but many real get-aways in the future!

 

With Gratitude February 12, 2012

Filed under: My posts — elanaalfred @ 11:07 pm

Dear Mr. O’Donnell,

I want to introduce myself to the man who has played a tremendous role in my life but doesn’t know it. My name is Elana Alfred, and I am married to Eamonn Kelly, who has cystic fibrosis. I read the article about you recently published in the Boston Globe and felt it only fair, since you shared your history with CF, to share mine with you.

I met Eamonn just over 4 years ago while we were both living in Chicago. After a month of dating he told me he had CF. At the time he was 24 years old and was able to live his life “normally” with the exception of having to do many hours of therapy and drugs every day. While the whole article touched me, I  got a lump in my throat when I read that CF patients typically live until their mid-20’s. While I have long known this fact, it still hits home. Eamonn is now coming close to 30.

Eamonn was in great shape when we started dating. In the fall of 2009, however, we were told of a new, potentially ground-breaking drug for CF patients. Eamonn’s doctors were encouraging him to be part of phase two of the study, while I was much more hesitant. I knew the pros and the importance of patients taking part in research studies, but I also knew the cons. It meant that he would have to stop taking some of his most effective drugs for a month prior to starting the study, and hope that he got the actual drug and not the placebo. Ultimately, it was Eamonn’s decision and I got on board. He knew he had to take the risk and decided to participate in the study. After less than a week of being off of his current drugs, Eamonn got very sick. He went into the hospital and was taken out of the study. For a short time I admit I was bitter—I wanted someone to blame.

For the next two years Eamonn’s health went on a downward spiral. It happened so fast. Every so often I made nasty comments about the research study and this stupid drug I knew nothing about. Little did I know that soon after, it would be Eamonn’s life preserver. While Eamonn’s health was getting worse and worse and he was in the hospital 4 times within 9 months, we were hearing about VX-770 and the promise it was showing in CF patients who were part of the study. Yet Eamonn had to wait to get hold of this drug, which was actually the most frustrating part of this whole process. However, in July 2011 we were informed that Eamonn and other patients in need were able to get early access to the drug for compassionate use.

I hope that I have not bored you with our story! Since being on Kalydeco, Eamonn’s health has quickly turned around, and he is becoming more and more like the Eamonn I met in 2007. Without the drug I am uncertain of where we would be today. Two days after taking his first dose of the drug, he was told that he was being put on a lung transplant list at MGH. Without this drug I am almost certain he would have needed a transplant by now. Without your determination, persistence, and achievements, I would not be as hopeful as I am today.

Mr. O’Donnell, in the article Richard Mattingly is quoted saying that you were “working for others who still had a chance.” Thank you for fighting for Eamonn. Thank you for telling us the story behind these miracle pills. Thank you for giving the CF community hope, inspiration, and a future.

With all my gratitude,

Elana

 

If you got it, Flaunt it February 4, 2012

Filed under: My posts — elanaalfred @ 7:44 pm

I must be married to Boston’s best looking man of the year. The number of stares he gets when we are out in public is overwhelming. Strangers just look, some even turning their heads as we walk by. Little kids are even mesmerized. So are the old ladies.

Even though I think Eamonn is the best looking guy wherever we go, I’m not convinced that is why people are staring. His oxygen may have something to do with it. As I mentioned in my first post, “This is My Story…” Eamonn is now using oxygen 24/7.  So he always has the tubes going into his nostrils, from a backpack he always has to carry, visible for everyone to notice. And what I have noticed are the looks he gets everywhere we go.

Yes, it’s human nature. One would not expect to see a 28 year old, healthy looking, handsome man needing oxygen tubes while ordering coffee in Starbucks. It’s what we see in hospitals, or casinos. I can understand that strangers are curious, and therefore start staring, probably without even realizing it. To be frank, it’s most likely what I would have done before knowing Eamonn. But now being on the receiving end of those looks, it’s rude. More and more, though, I have some fun. Just the other day, while in a store of which I will not mention the name (it rhymes with Roomingdale’s) a middle-aged lady was staring at Eamonn as if he had toilet paper stuck to his face. So, I did what any good wife would do- I started a staring contest.

When Eamonn began being on oxygen all the time I, myself, had to get used to it. I walked with my head low sometimes just to ignore what couldn’t be ignored. But it was Eamonn’s insights that changed my attitude. “I’m going to pretend as if this tube is just another accessory. I’ve always had my own sort of style, so this is just adding to what makes me unique—if you got it, flaunt it.” So instead of being threatened by so many men, women, and children staring at my husband, I just hold his hand tightly and keep on walking…and sometimes staring.

 

One Bag, Two Bag, Red Bag, Blue Bag

Filed under: My posts — elanaalfred @ 7:42 pm

What is your least favorite part of traveling? Packing? Turbulence? The kid screaming in the seat behind you with parents who think it’s adorable? My least favorite part of traveling is the anxiety of just getting to my gate. That is, when I travel with Eamonn.

 

I used to fly a lot when I lived in Chicago so I got accustomed to the security routine- wait in line, take off your shoes, take off your coat maybe even sweater, remove all metal jewelry and accessories. In fact, I thought ahead and did all of this while waiting in line so it seemed like a breeze.

 

The first time Eamonn and I traveled together was in 2009. I can’t remember if it was to Boston or New Jersey, but I remember the experience. I’m already an anxious flyer- always worried I’ll miss my flight- so I prefer to arrive at the airport well in advance of my flight time. Traveling with Eamonn has assured me that we have to be there at least 2 hours in advance of the flight because with him, we never know how long it will take to just get past security.

 

Eamonn can never travel lightly. No matter where or how long our stay, it appears as if we are uprooting our lives with all of our baggage. And believe it or not, most of what he brings cannot be checked because it is medical equipment and days worth of drugs. Recently we traveled to Washington, D.C. to visit Andrew and Lindsay for a couple of days. This was our security process: I went through with my normal routine as described earlier- 2 bags through, coat and boots through, jewelry off, and 2-3 minutes later (yes, I timed us!) I’m all through. Not so fast, it’s Eamonn’s turn. His coat and shoes through, his belt off and pockets empty, his vest machine (therapy device), bag full of drugs, and oxygen concentrator all go through the machine. As expected, each one right after the other is held up as airport security screams “Who does this belong to?” And Eamonn is standing there after having already gone through security himself, “That’s mine…that’s mine…that’s mine.” All three bags must be thoroughly examined and Eamonn patiently waits, answering any questions they have for him. Finally, they each go through the machine one more time, and 12-13 minutes later the kind security man gave Eamonn his vest device and said “I’ve been doing this a long time and I’ve never seen anything like this…but you’re all set.” After enough time for me to grab a beer at the closest airport bar we are heading to our gate.

 

That first trip together in 2009 I was not prepared for the stress and drama of airport security. It had always been so simple for me. Now we know to arrive with plenty of time before our flight so that we can both remain calm. We now appreciate and laugh at the different reactions of those that have the honor of searching Eamonn’s belongings, or the frustrating looks of those waiting in line behind him wondering why it is taking so long.

 

So if you ever know that Eamonn and I will be at the aiport when you are also traveling, be sure to get through security before we do!

 

This is my story…

Filed under: My posts — elanaalfred @ 7:36 pm

Some people fall asleep to the calming sound of the rain forest.

Some people fall asleep to the calming sound of Mozart.

Some people fall asleep to the calming sound of ocean waves.

I fall asleep to the hissing sound of an oxygen concentrator.

Just over four years ago I went on my last first date. Eamonn was everything I was looking for: respectful, thoughtful, funny, sweet. We had so many things in common it seemed almost strange.

About a month after that first date, Eamonn said, “I want to be exclusive with you but I have to share something that is very personal.” Awesome, he trusted me, right? Well, right, but what he shared with me was nothing I could have expected and nothing anyone is prepared for. “I have Cystic Fibrosis, a disease that affects my lungs,” Eamonn told me. I knew the term — after all I had taken biology in high school and college — but other than that, I was clueless.

I was asked on numerous occasions after that first month why I didn’t say adios to Eamonn when I had the chance. After all, a month of dating isn’t too serious so walking away couldn’t have been that hard. It wasn’t that simple. I already knew at that point that he did not define himself by his health, so why should I? To be honest at that point I did not know what dating someone with this kind of disease did mean – revolving my schedule around drugs he needed to take, hours of medical therapy that kept me awake at night, countless doctors appointments and hospital visits — but turning my back was not an option. I chose to stay curious. Yes, I have had my moments. I have broken down. I have doubted my ability to stay strong and supportive. But 4 years later, and I am married to the best thing that ever happened to me.

Eamonn and I have had a couple of rocky years with his health. When we started dating it was easy to ignore CF. Now, Eamonn is on oxygen 24/7, his name is on a lung transplant list, and I have slept in way too many hospital rooms. However, he was fortunate to start a new drug, VX-770, which is incredibly promising to CF patients and giving us hope for his future. So, I have decided to start this blog. It is not a pity party but it is a party to celebrate life! It is not meant to make light of the seriousness of CF or living with a disease of a similar nature. It is a space where I can share how I have learned to live and accept CF in my every day life.

In truth, I don’t know how long I have with Eamonn. But none of us know how long we ultimately have with the ones we love, and I’m just lucky that I know to appreciate every day with my husband. So, as I listen to the hissing of the oxygen concentrator, let me begin…