Breathe In, Breathe Out

Ain’t No Mountain High Enough March 13, 2013

I love hiking. Unfortunately, I do not go on hikes very often, especially because Eamonn cannot join me. But, for the past several years I have found a hiking buddy in my dad. Every summer we enjoy our annual hike together—the first year we took on Mt. Monadnock in New Hampshire, in the beginning of June on a record-high over 90-degree sunny day. The following number of hikes were less challenging, including one that was a rainy walk at Quabbin Revervoir, joined by countless mosquitoes. This past summer, with Abby joining us, we took on Mt. Monadnock yet again. I will admit, I was reluctant, feeling that I was not in good physical shape, but my dad was persistent (some might say stubborn) and we did it.

This summer I can say with complete confidence will be our most challenging hike to date, and possibly ever. My dad and I are participating in the 2nd annual Cystic Fibrosis Xtreme Hike at Jiminy Peak in Western Massachusetts. We will be hiking 25+ miles of the Taconic Crest Trail, covering three states: Vermont, New York, and Massachusetts. And yes, we will complete this in one day. Are we crazy? Maybe. But most importantly we’re dedicated to CF research, and we’re excited to be a part of the CF Foundation and community and all it is doing to provide a future and hope for CF patients and families.

In previous blog posts I have mentioned my frustration with not being able to make Eamonn healthier—I’d give him my lungs if I could (at least one), I’d do his drugs for him or his twice-daily therapy. Other than being supportive and loving, there is not much I can do to make him better. As a loved-one of someone with a disease, that is far and away the biggest challenge. I have never been one to enjoy sitting on the sidelines, and I certainly like being in control. ?????

Hiker Main LogoThe Xtreme Hike is my way of kicking CF’s ass, as cliché as that is. Hiking 25 miles will be physically strenuous and challenging for me both physically and mentally. Already I am doubting myself–whether I can train appropriately, get into good enough shape, and hike for 12-14 hours in one day in June. Will it be hard? Of course. Can I do it? I hope so! When I do start to doubt myself, or when I think I can’t go one more mile, I will think of Eamonn. He is what keeps me going everyday, and on June 22nd he will have to just push me a little more.

I made a commitment to train and push my physical limits for the next three months. Eamonn has been doing that for 29 years and not because he chooses to. I may not be able to destroy CF or undo its damage, but I sure as hell can challenge its determination to take us down and I can promise it won’t. Together, my dad and I will walk for Eamonn because…we can. And we are crazy.

Hiking Mt. Monadnock

Hiking Mt. Monadnock

Now it’s your turn. Please support my dad and me by donating to our hiking efforts by clicking here. Our goal is to raise a combined $5,000 and all of the money will go to the Cystic Fibrosis Foundation in continued support for the incredible research they have done and are doing to find a cure for CF. If you prefer to send a check please email me at elana.alfred@gmail.com for my mailing address.

In case you are wondering, we are also participating in the Great Strides CF Walk on May 19, 2013 in Boston. Our hope is to raise funds together, as a team effort, but that you will also walk with us and join our CF family! To donate to our walk team, Rock-It Lungs, and to start your own fundraising click here.

I cannot thank you all enough for the continued support. I know I have said it plenty of times before, but your love and encouragement never goes unnoticed and unappreciated. It is our family, friends, and community that gives us strength, so from the very bottom of my heart, thank you, thank you, thank you.

 

Mid-Winter Musings February 10, 2013

Filed under: My posts — elanaalfred @ 10:42 pm
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I think it is safe to say that many of us have been doing the same things this weekend—cuddling up with our softest blankets, watching marathons of our favorite TV shows and those rom-coms we never got to see, reading while drinking lots of tea or wine, and simply relaxing because that’s all we can do when Nemo is in town. Prior to yesterday I was somewhat disappointed by this winter. I expected a lot of snow, and we were not getting any. Instead we were getting cold, cold temperatures that really test our love for New England. During winter months in cold areas it is very common to hear people saying, “Next year I’m moving to Florida” or “Why don’t we live in Florida?” I’m sorry if you’re one of those people, but I just don’t get it. One of the best things about growing up and living in New England are the different seasons.  And we do each of them rather well.

 

 

Nemo 2013!

Nemo 2013!

My love for changing seasons does come with some difficulties, and ones that, before I met Eamonn, I often overlooked. Winter is especially challenging for him, particularly as a teacher for young children. We all know about this year’s flu epidemic, and I certainly hope that you all got a flu shot. As it is, staying healthy during the winter is hard—a common cold is inevitable. The flu is always a threat, but this year it became more of one, and as Eamonn is with children everyday, all day he is on alert constantly. I, too, am on high alert because having to take the train to work everyday with people wiping their noses and then holding on to the bar is a great way to spread germs.

 

 

Before I met Eamonn, I never thought too much about getting sick, and lucky for me, I have a strong immune system. But I remember quite well the first time I got sick while dating Eamonn—we were living in Chicago and our apartments were about 5 miles from one another. I had a slight fever and he would not come over to comfort me because he knew he couldn’t risk getting sick. I, however, thought he was being an asshole. Eventually, with enough persistence and begging, he came over with hot soup (he really is the best). I’ll never forget it because he ended up staying over to make sure I was ok, and we fell asleep holding hands, on my L-shaped couches.

 

 

I learned quickly that, though none of us want to get sick, if Eamonn gets sick it usually becomes more severe, and he can end up in the hospital, so he takes many precautions. For me, one of the hardest parts about getting sick is how careful I need to be around him. Earlier this winter I got the inevitable common cold, which lasted for a couple of weeks. During that time Eamonn and I couldn’t kiss each other goodnight or good morning or at all, we had to be extra careful about making sure we didn’t share drinking glasses or utensils, and I tried not to get too close to him as we slept in bed. It sounds small, but not kissing your husband for two weeks (especially when it’s my husband!) is a challenge, but giving him my sickness would be a lot tougher.

 

 

The winter is also challenging because with it comes more physical needs that most of us do not think about. As I

Eamonn "shoveling"

Eamonn “shoveling”

write this, I am listening to the bulldozer on our street making a first attempt to clear away the snow. Even that machine is struggling to do so. I cannot help but to think about, and dread, what all of this snow means if we want to eventually go somewhere—a lot of shoveling out our two cars on the street. For the average human being, shoveling can be quite strenuous, especially in two feet of snow. As a strong, muscular woman, I have no problem taking the burden of this work from Eamonn, but I know he wants to help and not assume I will do it on my own.

 

 

Another physical challenge that snow brings to Eamonn is simply walking. I know it sounds silly, but it really does become more of a hassle for him to walk in the winter. Not only is it cold (though he insists colder makes it easier for him to breathe) but with a lot of snow to walk through it becomes more strenuous. Usually we do not have two feet of snow, but when we do Eamonn dreads it even more than most of us.  But because he’s such a trooper, he just increases his oxygen flow and gets going!

 

 

Call me crazy, but I really don’t mind the winter in New England. Well, I could do without the freezing temperatures! I just cannot imagine a year without all four seasons, but most of all I think it makes us all appreciate the summer that much more. But as much as I don’t mind the winter, I do exercise much caution to make sure it does not get the best of Eamonn. Unfortunately, there’s not much I can do to control Eamonn getting sick, and he has enough hand sanitizer for a small village, but the things I can do to make it easier for him I do without hesitation. And if you don’t believe me, come take a look at whose car has already been shoveled out: Eamonn’s!

 

 

 

Onward and Upward January 16, 2013

Filed under: My posts — elanaalfred @ 2:51 am
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In 2012 one of my to-do’s was to start this blog. On January 4, 2012 I did just that. I thank everyone for being loyal readers, Facebook posters, and for your many words of encouragement and support. Beginning this online journal may not seem like a big deal for most, but sharing my very personal and intimate experiences and thoughts has, at many times, made me very vulnerable.  This blog has removed some barriers that I had started to build, and the more I am willing to share the more CF loses its power and strength over me.

 

 

With the New Year and all the reflecting on 2012 and onward, I have of course thought a lot about my blog-not so much about the words but the messages that I am trying to convey to you. My intention of writing this for the world to see was to share insight into living with/being married to someone with a chronic disease. In doing that, I was also able to express myself in ways that I was otherwise not comfortable with. Some topics have been more serious than others; I know I’ve made some of you cry, which I never intend to do, but I also hope I have made you laugh. Most of all, I hope that I have provided you with understanding and new perspective on life’s surprises and the challenges it throws at you. And I hope that each of you knows how your support and love help Eamonn and me with each obstacle we face, big and small.

 

 

Over the past couple of weeks, I spent a lot of time rereading each of my posts. I am definitely my toughest critic. In looking back at my messages I realized something—I need to listen to myself more. It’s easy for me to write and tell you that you should not take each day for granted, that life is too short, and to appreciate each moment, but what about the hard part—to actually live by that advice. Though this is awkward, I want to publicly apologize to my readers for telling but not always doing. I wholeheartedly believe and stand by each of my posts but I now am challenging myself to do as I say—live and value each day because the “future is unwritten.”

 

 

The past week I have been thinking of quitting my blog. I know, I’m so dramatic! On top of feeling overwhelmed by school and work, I felt hypocritical as I was reading everything I have written. But, I have a lot more to say and share with whoever is willing to listen. All that I ask is that you challenge me just as I have you. If you keep on reading then I promise to keep on listening to and reflecting on my own words. 

 

Fitting Into Your Genes December 19, 2012

I grew up in a large family—I am the fourth of five girls (and don’t have any pity for my dad- he wouldn’t have changed a thing!). The seven of us, including my parents, have now become 20 when counting spouses, soon-to-be spouses, nieces, and nephews, with one more on the way. So it’s no surprise that as a kid I always wanted and assumed I would have a large family—I wanted 4 kids, avoiding anyone having to be a middle child, 3 girls and 1 boy. It did not matter in what order they came, but it was most important that they were all healthy.

I’m now 28 and married, with a very different family plan in mind. First, it’s important to say, primarily to my mom and mother-in-law, that Eamonn and I are not having children any time soon. Don’t get any ideas! But what I do want to share with all of you is an experience that I just recently went through, and that Eamonn and I will continue to think about as we decide when or if we choose to start a family.

As a woman, I have assumed that I will one day have my own children, experiencing the joys of pregnancy and becoming a mother. Since high school, before Angelina Jolie made it trendy, I also wanted to adopt children from abroad. After my trip to an orphanage in South Africa, that has since been questioned, but Eamonn and I continue to discuss domestic adoption. When I started learning about cystic fibrosis, having children was not on my mind—at all. At that point I was dating Eamonn, not thinking about marriage. As our relationship grew and I realized the probability that it wasn’t going to end, I started to really think about what CF meant for me, long term. I quickly came to understand the impact that it would have on us having children, which was far and away the topic that I have most grappled with since knowing Eamonn has CF.

What I most appreciated is how open and honest Eamonn and I were with each other as we began these mature conversations, which I never expected to have, nor think about until I was ready. For reasons that I am not going to explain I learned early that when/if we decided to have kids, it would not happen in a traditional manner. But what I could not control was the likelihood of having a biological child  who has CF or carries the gene.

geneticsWe all learn in freshman year biology about recessive and dominant genes. Actually, CF is a common example used by teachers/professors when reviewing this topic. Knowing that Eamonn has CF we are obviously aware that he has two recessive genes. To ensure that our children would not have CF I, then, cannot be a carrier. If I were a carrier, then our biological children would have a 50% chance of being born with the disease. For a long time this was hard for me to truly comprehend. I did not want to even be thinking about children let alone the concerns of their genetic make-up; I did not want to be having these conversations; I did not want to think about potential future decisions or choices Eamonn and I would have to make regarding having children.

Being that this was out of my hands, I could not allow myself to focus on it so much. I also didn’t want so much of my attention and energy revolved around our future, occupying time that we could be concentrating on the present. So I chose to put these matters to the side, knowing that someday, when I was more prepared to tackle them, we’d resume the discussions.

After Eamonn and I got married I realized that I wanted to know sooner rather than later if I was a CF carrier. More than I wanted to admit, I think not knowing was harder, feeling the burden of so many “what ifs…”. I eventually decided that I was ready to get genetically tested for CF mutations, along with other genetic conditions. However, it took me a long time to make the phone call to schedule the appointment with the genetic counselor. I think subconsciously while I no longer wanted to carry the burdens of not knowing, I was not prepared for what I did not want to hear.

I finally made the call and booked an appointment at the genetic clinic of Children’s Hospital, where Eamonn is a patient. Two weeks later Eamonn and I were meeting with the counselor. I thought the appointment would be relatively easy—I knew what I wanted to accomplish, it was clear as to why we were there, and I assumed that the actual blood draw would be the hardest part. Oh, how I was wrong. She asked so many questions, trying to understand our family’s backgrounds and explaining to us our options for testing, of which there were many. And though I was nervous from the get-go, learning that there was a 1 in 25 chance that I would be a carrier put a pit in my stomach (I thought it was far less likely). As the counselor explained everything to Eamonn and me, I fought back tears. Here I am, a happy 28-year-old woman married to the best person in the world, not yet ready to be a mom, but desperately wanting only the best for my children.

Two weeks after the appointment I had a missed call from an unknown number. I listened to the voicemail, not expecting the results so soon, shaking as I realized whom it was on the other end. We had decided that she could tell me the results in a voicemail so as to avoid phone tag. When I heard her say, “I have good news” I somewhat stopped listening to take a long deep breath. I know this might sound dramatic, but in the weeks waiting for the results, I tried to prepare myself for negative news—that I was a CF carrier, which meant there would be a 50% chance that each of our biological kids would then have the disease. I knew going into this experience that no matter the outcome Eamonn and I would deal with it together, but I simply did not want another hurdle to leap over.

Eamonn and I still have a lot to consider once we decide that we are ready to start a family. We have come to some resolutions—we do not plan for 4 children, it does not matter if we have boys or girls, domestic adoption is an option—but some questions and decisions we continue to ponder. Because I wish so badly that I could stop CF in its tracks, it is hard for me to know that our biological children will, no matter what, be carriers of this disease. But we are overwhelmingly thankful that we can feel more secure in having biological children who will hopefully grow up healthy (and happy). This experience has taught me, more than anything, to never take anything for granted. No one can assume their plans will turn out the way they expected—but appreciate what is given to you, and it might turn out even better than what you had in mind! My family, no matter the size, and no matter what imperfections it has, will be my world.

 

Jack Be Limbo Jack Be Quick November 13, 2012

Filed under: My posts — elanaalfred @ 7:00 pm
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When I was about 12 years old, give or take, I won the limbo contest at our Worcester Wahoo swim team end-of-season party. At almost all of the Bar- and Bat- Mitzvahs I went to when I was thirteen I was a finalist for the limbo, with the exception of my own. Not cool, Mr. DJ, not cool. Yes, 15 years later and I am still bitter. To be fair, I always had the upper hand because I was short, and incredibly flexible. Not anymore (well, I’m still short!). These days, however, I’d have no chance at a limbo contest. My glory days are certainly behind me. But, it feels at times like I am in my own limbo contest, with Eamonn right beside me.

 

 

Eamonn has now been listed for a lung transplant for just under 16 months. His health is stable, he’s gaining weight, and he generally feels good. 16 months ago, we both would have told you that by now Eamonn would have a new set of lungs, and would be on the road to recovery; but with the timing of his new drug, Kalydeco, he has been able to hold off surgery. With all that said, though, Eamonn’s name remains on the transplant list because once on it, there is no coming off of it.

 

 

So what does all this mean for us? I want to make myself very clear by saying that I am in no way complaining that Eamonn has not yet had a transplant. A transplant is a last resort, and it is ideal to put it off as long as possible until absolutely needed. It’s a great thing that at each 4-month appointment with his transplant team, he has not gotten higher on the list. It’s a great thing that he is staying healthy.

 

 

However, being listed with no answers in sight means that whether we like it or not, we are constantly in the unknown–what Eamonn and I refer to as being in transplant limbo. We are stuck in the in-between place of Eamonn being healthy and feeling good, while knowing that a transplant could be a phone call away, never knowing where you stand on the list, but wanting to live life the way we want to live it.

 

 

For the most part, Eamonn and I have not allowed his name on the list to stop us from doing what we want to do—specifically in the case of traveling. In the beginning we were not traveling anywhere more than a 4-hour drive away (those on any transplant list have similar rules) but as time passes we have begun to steer away from this rule, obviously making sure to notify doctors when we do take trips. But traveling is only the beginning. Because there are so many unanswered questions, one of our major concerns is family planning. Though we are nowhere near ready to start having children, we have a lot to consider once we do begin those real conversations. And never knowing when Eamonn might need a transplant is somewhat daunting. If he has not had a transplant when we start wanting a family, do we take the risk of moving forward still not knowing? Do we even want to bring children into that kind of life, or have them watch their dad as he struggles to get healthy? Or do we make our own decisions and not allow CF to get in our way?

 

 

As Eamonn’s wife, since the day that he was listed or even earlier, I have been absolutely dreading his transplant day to come. Sometimes I imagine the moment he gets called and what it will be like as I wait for him during surgery, but quickly try to stop my mind from wandering. There is just no preparing for your husband to have to get a lung transplant. So now almost 16 months of being in this limbo, and I have to admit that as the time passes, that day seems more and more unreal and harder and harder to come to terms with. It’s begun to feel like a distant reality, one that I can start to ignore and put behind us. Then I remember, this is not necessarily such a distant reality—Eamonn is on a transplant list, his name is not coming off of it, and someday he will get that phone call.

 

 

Eamonn does not keep many lists, but he does have one. He has been keeping a list of the activities he wants to do post-transplant, ones that he cannot do now because they are too physical for someone on 24/7 oxygen. Surfing, salsa dance lessons, blowing a shofar, to name a few activities on the list, but every day it keeps on growing. As much as I do not want his transplant to happen until needed, being in this limbo means waiting for Eamonn to get to live his life to his absolute fullest potential. Being in limbo means holding off on doing things he loves to do. I’d be lying if I said that was not terribly frustrating to watch him as he waits on the sidelines. I want him to get to do everything he wants to do.

 

 

Every 4-month appointment with the transplant team is a reminder—that though his health is stable it remains out of our control. It’s a reminder that there is so much we do not know and will not get answers for. It’s a reminder that we are waiting. While I am not as physically flexible as I was at 13 years old, I am learning that this new limbo requires a flexible approach to make it through life’s uncertainties.

 

 

 

 

 

 

A Day in The Life of Eamonn October 28, 2012

Filed under: My posts — elanaalfred @ 9:22 pm
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Recently, deciding to be wild and crazy on a Friday night, Eamonn and I watched the documentary, “Life In A Day.” This film explores people’s lives from all over the world on July 24, 2010. As a viewer, it opens us up to a world we are mostly unaware of, making us realize that each of our own lives are only a small part of a significantly larger whole.

This got me thinking–I have been sharing stories of what it is like to live/be married to someone with cystic fibrosis, but most of you really do not understand the life of a CF patient. So, Eamonn and I decided to document his life in a day. Lucky for you, it’s not his whole day, only the CF-related aspects of it.

This film, to the best that he could, shows how much time Eamonn spends taking care of his health in one day. He takes us with him as he takes care of himself.

I want to thank Eamonn for volunteering to document himself, and truly letting everyone into his life.

 

Shana Tova! September 16, 2012

Filed under: My posts — elanaalfred @ 5:50 pm
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When I was younger, for every New Year’s I committed to the same resolution—I wanted to be as cool as my sisters. I leave it up to you to decide if I accomplished this, but please keep your opinions to yourselves. I don’t want my sisters to be insulted! Nowadays, my resolutions have matured a bit, and I strive for different things, continuing to learn from my sisters, determined to be as great of a role model for them as they have been for me.

As I hope you all know, the Jewish New Year is upon us. Many of us will be spending time in services, singing prayers that we don’t always understand, seeing old friends we only see this time of year, or trying to keep our eyes open as we listen to longer-than-normal sermons. Many of us are also taking this time to reflect—on the year we are leaving in our past and the year to which we are looking forward. We are also reminded that none of us know what the coming year holds and that life is not to be taken for granted.

I know that I have not been around for too long and I have a lot to figure out about life—but as an almost-28-year-old I have been faced already with many challenges and lessons. It’s ironic how the things that try to keep you from living your life fully only make you want it more. CF has given me a gift. I am always reminded of how precious our lives are and how I cannot take one moment for granted. I know that tomorrow is not promised to any of us, so today I should make the best of what I have. I know to tell and show Eamonn how much I love him, even when I can’t stand to be around him (oh please, we all know it happens)! I know to make sure that our families know how much their support means to us—without them I honestly don’t know what I would do. I know to laugh often. I know to keep things in perspective, however challenging this is for me. Most of all, I know to share my love—as often as I can I try to tell those closest to me how much they mean to me, whether in words or action because as Eamonn loves to quote, “the future is unwritten.”

Cystic Fibrosis has taught me many new life lessons, good and bad. Far more than anything, though, being married to someone with this disease has given me appreciation and perspective on how I choose to live my life every day. Eamonn and I joke often about how lucky we are—that we have a constant reminder of just how vulnerable we all are. Eamonn has taught me to not focus on the negative, whether big or small, but to accept the cards we are dealt and make the most of our hand.

You don’t have to listen to this 27-year-old know-it-all, but just consider that none of us knows what tomorrow will bring. We all know that, but easily forget that, so sometimes a reminder can go a long way! Appreciate today and every moment you have with your loved ones. I certainly have to work on this as well, so for this New Year I am promising to be better and love more. I’ll also be working on making sure I am as cool as my sisters!

I hope you all have a very happy and healthy New Year, filled with love.