Surveys Play a Critical Role in Improving the Patient Experience

I used to dislike surveys, polls, and questionnaires. I understood why they existed — customer or patient feedback is important — but I never really saw anything change once I took a survey. I hadn’t considered that perhaps my feedback was unrealistic or didn’t represent the entire community. It wasn’t…

Having a Rare Disease Is a Lot Harder Than You Think

Because we just honored Rare Disease Day on Feb. 28, I’d like to share what it’s like living with one. Having a rare disease means strangers telling you what your rare disease means, even though they’ve never lived or worked with it themselves. It means existing with stereotypes…

How a Romance’s Death Led Me to Finding a More Powerful Love

I’ve been in love. It was magnificent. It also hurt. Love belongs among the most powerful building blocks of our cosmos. Passion drives creation, compassion nurtures it. Blend the two for love. Tragically, I’ve found that adding a sick body to the mix can threaten the balance. Passion wanes as…

Rumbling With the Transplant Decision

It’s been three and a half years since I “chose” life through a double-lung transplant. Life-and-death decisions rarely are black and white. The path to making my decision wasn’t linear; it was a journey to wrestle through, devoid of clear-cut answers. I hope this column will help those on…

Denying My CF Is Making Me Hungry

I went to bed hungry last night, and I woke up scared of food. This is my new reality. Although this is an old-new one I’ve lived (and lived to forget) time and again, I still don’t have it mastered. Years ago, I couldn’t eat more than mashed potatoes and…

How I’ve Learned to Use My Insecurity to My Advantage

I recently saw a meme in which a person is smiling or laughing in the first panel, then looks utterly dismayed in the second. The second panel’s overlay reads: “Tfw [that feeling when] I realize I’m being perceived by everybody else who ever interacts with me.” This meme is one…

Featured Column

How I Discovered That PTSD Was Causing My Post-transplant Struggles

PTSD, mental health, communities, stress, grateful, work, trauma, rare disease day, transplant, CF community, National Blood Donor Month, birthdays, holidays
Columnist Lara Govendo addresses an issue that several readers may relate to: post-transplant PTSD, which can wreak havoc.

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