Living in Limbo

When you are waiting to be listed for a lung transplant, it can feel like you're in limbo. Through the many frustrations and uncertainties, I've learned that it's important to get support -- not only for my physical health, but for my emotional health as well.

Dec. 6, 2018 | 3 min read
Elizabeth Dolan

Limbo: “An uncertain period of awaiting a decision or resolution.”

Gray area: “An ill-defined situation or field not readily conforming to a category or to an existing set of rules.”

These are two words that have come to define my life a lot lately. Although I am in the stages of advanced lung disease, I'm still not in “the window” to be listed for a lung transplant. I'm sick, yes -- but sick enough to need a transplant? Not yet.

People have shared with me on more than one occasion that the year leading up to being listed for transplant is a difficult and wearisome time. Speaking from experience, I can say it definitely is. You go through a myriad of emotions, from excitement over getting a second chance at life to complete frustration and sadness over wondering when -- or if -- you'll get that second chance.

This “limbo” period has taken away my independence and forced me to become more reliant on my parents, which means they now grocery shop, cook, clean, and sometimes do laundry for me if needed. My body is working harder than ever to just breathe, and it leaves me with such little energy that some days, all I have the strength for is breathing treatments and meals.

After being deferred for transplant a second time in September 2018, the reality of my situation really set in and my depression worsened. I began sleeping for 17-plus hours every day and the thought of getting out of bed was exhausting. I would find that I hadn't left my apartment for several days in a row and it was as if I was in a perpetual fog that just wouldn't lift.

It wasn't until I talked with my social worker and psychiatrist that I was able to fully admit to myself that the decline in my physical health had caused my emotional health to take a turn as well.

This perpetual limbo has left me wondering when I'll get my life back … when I can start traveling again and crossing destinations and experiences off my bucket list. It's as if I'm stuck on a train platform waiting for the next train to arrive, but it seems to be delayed and we aren't sure when it will arrive.

I have to constantly remind myself that it is only temporary and this, too, shall pass.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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January 2023 We were deeply saddened to learn of Elizabeth’s passing. She was a patient advocate, social media extraordinaire, Tomorrow’s Leader, event speaker, and contributor to the CF Community Blog. She will be deeply missed by many.

Born in St. Louis, Mo. but raised in Wichita, Kan., Elizabeth was diagnosed with cystic fibrosis at 4 months old. The youngest of three, and the only child with CF, Elizabeth's health began to decline during her sophomore year of college, causing her to withdraw from school and move home. Three years ago, Elizabeth moved to the Bay Area to focus on her health. Despite the progression of her disease, Elizabeth enjoys traveling, photography, reading, and buying too many sweaters for her little dog, Tucker. 

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