For people living with cystic fibrosis, uncertainty is often a constant companion. But few have faced it quite like Inka Nisinbaum.
On our video podcast Inka Nisinbaum is wearing a head wrap, due to skin cancer removal she recently had. A higher risk of cancer is an unfortunate fact for people who have received transplants.
Inka’s memoir, The Anomaly: Living on Donated Parts and Dark Humor, tells the extraordinary story of a woman who was given just four years to live. Born with cystic fibrosis in 1979, her parents were devastated by the diagnosis and the grim prognosis that accompanied it. Yet Inka refused to become a statistic.
At 23 years old, after waiting for an organ donor, Inka underwent a rare and highly complex double lung and liver transplant. Every day leading up to the surgery carried the same question: Would she survive long enough to receive the gift of life?
Rather than allowing fear to consume her, Inka prepared for every possibility. She made a list of dreams she would pursue if she lived and a bucket list in case she didn’t. Then she did what she has done her entire life, she fought.
The transplant gave her nearly 17 years of health and stability. She fell in love, got married, moved from Germany to the United States, and achieved milestones she once thought might be impossible.
Then, in 2019, she received another devastating blow. Doctors diagnosed her with chronic lung rejection, something she describes as a “second death sentence.” Her lung function declined rapidly, and treatments failed to reverse the damage.
But once again, Inka refused to surrender.
Encouraged by her husband, she returned to one of the things she loved most: running. Starting with just one minute at a time, even while hospitalized with a PICC line in her arm, she slowly rebuilt her strength and endurance. Step by step, mile by mile, she worked her way back and eventually completed a half marathon.
Against the odds, her lung function stabilized.
Perhaps the most remarkable chapter of her story came later when she became the first woman known to have a baby after a double lung and liver transplant—a milestone that many would have considered impossible.
Throughout her memoir, Inka shares her journey with honesty, resilience, and plenty of dark humor. It is a story about survival, organ donation, hope, and the determination to keep moving forward, even when the future is uncertain.
Her life is proof that while we cannot always control what happens to us, we can choose how we respond.
And sometimes, that choice changes everything.
To listen to the Living with cystic fibrosis podcast. Or to watch it on YouTube
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