Blog Archive

  • 20 Days Later

    Twenty days later… It’s been 20 days since the wildest 24 hours of my life. Twenty days ago, at 10:04 p.m., the nurse coordinator on duty started calling with a heart offer—and I continued to sleep. She called my family, who also began calling me, and still, I slept. I had taken a sleep aid…

  • Saying Goodbye To A Friend

    I am about to write down something I have only talked to my therapist about. I am going to need you, like a therapist, to stick with me, because I know what I am about to explain sounds really odd. At my last appointment with my transplant team, I brought up my desire to be…

  • My Not New Heart

    I am not getting a new heart. Not really. No, nothing has changed in my listing status, there have been no red flags thrown. I am still waiting and hoping. That hasn’t changed. But the truth that we all know, and seldom let ourselves think about, is that the heart I receive will only be…

  • Tuesday Night Roller Coaster.

    Tonight was an emotional roller coaster, and it started with Garth Brooks. “Much Too Young (To Feel This Damn Old)” came on, and I was doing fine singing along until the line, “All my cards are on the table with no ace left in the hole, I’m much too young to feel this damn old.”…

  • Letting Go

    As my evaluation dates grow closer, I keep thinking about being sick enough, and whether I even know what that means. Medically, it isn’t my choice whether I’m sick enough; that decision is above my pay grade. It is however, my choice whether I feel sick enough to agree to being listed, and to accept…

  • CHD Awareness?

    Awareness matters, but so does how it is framed. Some imagery meant to support parents can unintentionally teach children with congenital heart disease that they are a burden.

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