Breathe In, Breathe Out

This is my story… February 4, 2012

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…

 

5 Responses to “This is my story…”

  1. Steph Says:

    Hi there, found your blog through pinterest. Im 25ypwcf. Just stood out to me that your partner is on vx770, does he have the G551D mutation?
    Hope he gets the call soon!

    • elanaalfred Says:

      Hi Steph, I’m glad you’re reading my blog! My husband is on the new Vertex drug and his health has improved immensely! Are you also on it? And seen any changes?

      • Steph Says:

        Hi, thats super awesome to hear about the health improvement! I also have the G551D( and Df508) mutation. Im from little old New Zealand so we are a long way from getting vx770, I would have to fork out the entire 300k yearly pricetag from pocket and there isnt a chance of that!
        Im lucky and still very healthy so hoping that it keeps up till teh pricetag comes down!

  2. Jake S. Says:

    Sometimes it’s easy for us with CF to forget how it affects our loved ones, most especially our significant others. I look forward to reading more from you. Who knows, might help me connect more to my s/o whenever that time comes. Thank you for sharing your story.

  3. Thanks for finally talking about >This is my story | Breathe In, Breathe Out <Loved it!


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