HV123- Cystic Fibrosis

Hearing Voices from NPR®
123 Cystic Fibrosis: Living with CF
Host: Barrett Golding of Hearing Voices
Airs week of: 2011-10-05

“Cystic Fibrosis” (52:00 mp3):

Audio diaries document a decade of life with CF, a chronic, often deadly, genetic disease:

A classic Radio Diaries: When this program premiered, Laura Rothenberg was 21 years old, or, as she likes to say, she already had her mid-life crisis a couple of years ago, and even then it was a few years late. Laura has cystic fibrosis, a genetic disorder that affects the lungs and other organs. People with CF lived an average of 30 years then (now it’s 37). Radio Diaries gave Laura a tape recorder and, for two years, she kept an audio diary of her battle with the disease and her attempts to lead a normal life with lungs than often betray her.

“My So-Called Lungs” was reported by Laura Rothenberg and produced by Joe Richman, for Radio-Diaries-dot-org, with support from the Open Society Institute and Corporation for Public Broadcasting. Deborah George was the Editor. Laura Rothenberg died in March 2003. Her memoir, Breathing For a Living was published a few months later. And Joe Richman had this Laura Rothenberg Remembrance on NPR.

In 2010, there were 1,770 lung transplants performed in the United States — the most ever in a single year. For a person with Cystic Fibrosis, the transplant may extend life by years — or it could lead to continued suffering and rejection of the new organ. This documentary follows two young people struggling with end-stage Cystic Fibrosis, and struggling with a decision about transplant. While most of us are just hitting our stride in our late 20s, Beth Peters and Brian Sercus are medicating, massaging and coaxing their lungs into lasting as long as possible. Producer Catie Talarski documented Beth and Brian for a year to understand what its like to live with this chronic disease.

Brian’s blog is Don’t Hold Your Breath and Beth is a Cystic Gal. More Catie Talarski pieces are at PRX. Music in the story:
Matt Costa “Bleeding Hearts” Mobile Chateau
Mons Jacet “Midnight Basketball” Chronicles Of Chronicles Of Anarcho Punk Kid
Stars “What the Snowman Learned about Love” Heart
Tiago Sousa “The Writer” & “The Valley” Walden Pond’s Monk

“Four Failings Lungs” was edited by John Dankosky of WNPR, Connecticut Public Radio, where a version of this piece premiered on their series Where We Live. From
another episode, here’s Beth’s poem:

As a child, Howell Graham was diagnosed with cystic fibrosis. In 1990, he had a double-lung transplant — a risky, experimental operation at the time. Today, Howell is one of the longest-surviving recipients of that surgery. Howell and his mom, Nan, remember the days after his surgery. Music: Pram “Mother of Pearl” Museum of Imaginary Animals.

The Cystic Fibrosis Foundation has chapters in your state.