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I’m slowly learning to share my life with cystic fibrosis and transplant

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After struggling with writer’s block, a columnist looks within

By Jennifer Bleecher

My mother was recently cleaning out her attic, trying out the minimalist technique she’d seen on a Netflix show. In the process of deciding which items still bring her joy, she gathered a bag full of my school papers from childhood. Forty years later, she still couldn’t bring herself to throw them away. Instead, she delivered them to my house.

As I looked through the papers, it struck me how many short stories and poems were in the pile. And this was only a small sampling of my work, as no mother can keep every creation made by their child. It reminded me that I have always loved to write. Read the full story in Cystic Fibrosis News Today.

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Lung Transplant Outcomes for COVID Respiratory Failure Similar to Other Etiologies

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— Survival, freedom from graft failure rates high, retrospective study finds

By Sophie Putka

Patients who received lung transplants due to irreversible respiratory failure from SARS-CoV-2 infection had similar outcomes to those who received lung transplants for other reasons, a retrospective study found.

Among 195 patients with COVID-19-related acute respiratory distress syndrome (ARDS) who underwent lung transplants, 1-, 6-, and 12-month overall survival rates were 99%, 95%, and 88%. For 190 patients who had COVID-19-related pulmonary fibrosis, survival rates were 96%, 92%, and 84%, respectively. Read the full article in MedPage Today.

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Normal lungs successfully transplanted into bodies with reversed organs

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By Sandee LaMotte

CNN — Fifty-year-old psychologist Dennis Deer’s lungs were failing, scarred by a rare inflammatory condition called polymyositis. Despite carrying supplemental oxygen, the Cook County Commissioner for the 2nd district in Illinois was finding it harder and harder to perform his job.

“It was terrible. I would walk 10 steps and I was gasping for air,” Deer said in a news conference Monday. Read the full story from CNN.

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‘Make Every Breath Count’

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A double lung transplant recipient’s gratitude knows no bounds

By Laura McFarland

‘Make Every Breath Count’

A double lung transplant recipient’s gratitude knows no bounds | Photos by Jay Paul

BY LAURA MCFARLAND

AUGUST 13, 2023Expand

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Lung transplant recipient Sam Kirton at the National Donor Memorial at the United Network for Organ Sharing

“Are you ready to take your first breath?”

When Samuel Kirton’s wife, Susan, leaned over his hospital bed and asked him that question, he admits he initially shook his head no.

Kirton, who had received a double lung transplant the day before, knew he was at a point of no return. Read the full story in Richmond Magazine.

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How a double-lung transplant affected my body and self-image

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Accepting the scars and a new physique wasn’t easy

By Lara Govendo

After I had a double-lung transplant six years ago due to cystic fibrosis (CF), it was hard to look at myself in the mirror.

I would stare at my stapled chest, and feelings of disbelief and grief would bubble to the surface like never before. Thoughts raced through my mind: What will people say when they see my scars and disfigured chest? How will I ever feel comfortable in my own body again?
Read the complete article in Cystic Fibrosis News Today.

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Race-specific approach to spirometry disadvantages Black patients

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By Elana Gotkine

A race-specific approach to spirometry interpretation results in a lower lung allocation score (LAS) for Black patients and a higher LAS for White patients, according to a study published online May 26 in the Annals of the American Thoracic Society.

J. Henry Brems, M.D., from the Johns Hopkins University School of Medicine in Baltimore, and colleagues examined the impact of a race-specific versus race-neutral approach to spirometry interpretation on LAS among 8,982 adults (90.3 percent White; 9.7 percent Black) listed for lung transplant in the United States between Jan. 7, 2009, and Feb. 18, 2015. At listing, the LAS was calculated using a race-specific and race-neutral approach. Read more in Medical Xpress.

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CareDx’s AlloSure Lung dd-cfDNA Testing Service Receives Medicare Coverage for Lung Transplant Rejection Monitoring

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AlloSure Lung Represents First dd-cfDNA Approved by Medicare for Lung Transplant Patients

BRISBANE, Calif.–(BUSINESS WIRE)– CareDx, Inc. (Nasdaq: CDNA) – The Transplant Company™ focused on the discovery, development, and commercialization of clinically differentiated, high-value healthcare solutions for transplant patients and caregivers – today announced that CareDx’s AlloSure® Lung donor-derived cell-free DNA (dd-cfDNA) molecular testing service has received Medicare coverage.

The MolDX technology assessment program has determined that AlloSure Lung will be covered under the existing Medicare Local Coverage Determination for Molecular Testing for Solid Organ Allograft Rejection for use in the surveillance setting in lung transplant patients, effective May 9, 2023.1 Read the complete press release on CareDx.com.

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Race-Neutral Testing Could Reduce Bias in Lung Transplant Allocation, Study Suggests

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By Rose McNulty

Interpreting spirometry with race-specific reference equations led to a lower Lung Allocation Score (LAS) for Black patients and higher LAS among White patients, which could potentially contribute to racially biased allocation of lung transplants.

Interpreting spirometry with race-specific reference equations led to a lower Lung Allocation Score (LAS) for Black patients and higher LAS among White patients,1 which could potentially contribute to racially biased allocation of lung transplants, according to new research published in Annals of the American Thoracic Society. Read the full article in AJMC.

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Lung Transplant Brings Two Families Together

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Two families, that were separated by distance, but became united as one. Frencesca Greco-Magee was in need of new lungs after she was born with pulmonary fibrosis, a condition that covered her lungs with holes. After being put on double waitlists at two separate hospitals, she moved down to Duke to improve her chances after more than 2 years of failed transplants. Then five days after moving, her prayers were answered and her new lungs came with a new family from Maryville, Tennessee, who just lost their son Bradley. She penned a thank you letter to Bradley’s family and started a connection they all hope will last a lifetime. Watch the full story from WATE-TV 6 News.

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Race-neutral testing could have given access to life-saving lung transplants for more black patients

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Peer-Reviewed Publication

June 21, 2023 – NEW YORK, NY— Race-neutral lung function interpretation could increase access to lung transplants for Black patients with respiratory disease, according to new research published in the Annals of the American Thoracic Society online ahead of print.

In “Race-Specific Interpretation of Spirometry: Impact on the Lung Allocation Score,” lead researcher J. Henry Brems, MD, MBE of the Johns Hopkins School of Medicine, and colleagues investigated how race-specific versus race-neutral equations alter the lung allocation score (LAS) and the priority for lung transplant across races. The lung allocation score determines which patients get priority on the lung transplant listing.
Read the full article from the American Thoracic Society.

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