It’s Easier The Second Time

I’m back in Durham, NC with my daughter, Anna. She has been listed for a double lung transplant. That means she is in the national registry of patients waiting for donor lungs. The first time she was listed 6 years ago, we thought the call would literally be in minutes after being listed. The wait was 19 days. When thinking in seconds, that seemed like an excruciatingly long time. This time around, we know not to hold our breath. We have been prepared by the Drs that this wait will likely be longer. Anna’s body has figured out some details about her current lungs that make it more likely to spot the second set more quickly if they have similar antibodies to the first set. So we have buckled in and are ready for the wait.

I love knowing, being aware of what is going on or likely to happen. So much of Anna’s journey has been filled with the opposite and I have to work super hard to just be in the moment. Honestly, I don’t really know what’s going to happen with her second transplant journey but I like to fool myself into thinking I know something. I do know the area, literally, and can drive with more ease as we go to appointments, classes and pre-transplant rehab. The classes help educate the patients and caregivers so we know what’s going on and what to do about all things transplant. For the most part they are refreshers since this isn’t my first rodeo. But there’s a lot of new information and classes they didn’t have 6 years ago. I am thankful to learn and relearn.

I feel more patient this time around. I like that feeling. On the flip side I also feel more dread. I don’t really know why but I do. Transplant has all kinds of nasty worse case possibilities from loss of fingers to death. I feel the weight of that more this time. It’s hard to hold my daughter loosely; remembering she is not mine and I do not have control over how her life goes. I was reminded of this in our Caregivers’ Support Group. It felt good to let myself connect with my fears and my sadness. Sometimes I can get wrapped up in tasks that I forget about the fragility of this journey.

Categories: Anna the lemon, emotions, lung transplant | Tags: | 6 Comments

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6 thoughts on “It’s Easier The Second Time

  1. Grace Cabalka

    Thanks for sharing Karen, and for your transparency. I pray peace to overflow over your dread…and for the fear to draw you closer into His safe, loving, strong embrace. Love you and will be looking for updates.

  2. Cathy Johnson

    Oh Karen, Brad’s and my heart is so heavy after reading your post about Anna. We can not begin to imagine the swirl of emotions you and your entire family are going through; let alone what Anna is feeling too. We are humbled & grateful to be included in the privilege in knowing God hears all our prayers and petitions; and we will earnestly be praying God’s divine intervention for the perfect set of lungs for Anna with no complications. Thankyou for your words of wisdom each time you write this blog.

  3. Wendy Redal

    Thinking of you there, Karen, and Anna. So much to hold loosely, indeed. What a wondrous journey, frightening and promising at the same time. Praying new lungs are there for her, and that they will be accepted.

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