By News 12 Staff
A Plainview man is celebrating the 25th anniversary of his double lung transplant.
When Gary Klausner was 10, he was diagnosed with cystic fibrosis. He says the life expectancy in 1975 for someone with the disease was around 16. Watch the full story from News 12 Long Island.
Getting to the core of who I am was a pivotal moment on my journey
By Lara Govendo
I had an identity crisis when I turned 30. At the time, everything that had previously defined me — my health, my job, my financial independence — had been stripped from me. It felt like the rug had been pulled out from under my feet.
Most 30-year-olds aren’t writing out their final wishes in the event they won’t be able to communicate, but several years ago, I was. As I finished the evaluation for a double-lung transplant, made necessary by complications of cystic fibrosis, I had to rumble with death more than life. While preventing death was the goal, it wasn’t promised. Read more in Cystic Fibrosis News Today.
Poor functional status while on waitlist is linked to worse outcomes, study finds
By Steve Bryson, PhD
Children and adolescents who are wait-listed for lung transplantation and have the worst functional status are at the greatest risk of being removed from the waitlist due to clinical deterioration or death, a study reports.
The risk is highest for patients with cystic fibrosis (CF) and for adolescents compared with younger children, data indicate.
Read the full story in Cystic Fibrosis News Today.
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.
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.
Absence of a dominant genus, more diversity indicative of better lung function
People with cystic fibrosis (CF) and advanced lung disease who have bacterial communities dominated by just one type of bacteria have a higher risk of lung transplant or death than those with more diverse communities, a study reports.
The risk of needing a lung transplant or death was increased by 80% in patients with low bacterial diversity, compared with those without a dominant genus — a median survival without needing a lung transplant of 1.6 years versus 2.9 years. Read more in Cystic Fibrosis News Today.
Patients receiving treatment for cystic fibrosis wore actigraphy sensors and cough monitoring systems for the majority of a 12-week period, according to a poster presented at the North American Cystic Fibrosis Conference.
“Overall, we noted high adherence to the use of an actigraphy watch and a cough sensor monitor during this 12-week study of people with cystic fibrosis on commercial Trikafta,” Andrew T. Braun, MD, MHS, assistant professor at the University of Wisconsin School of Medicine and Public Health and director of the UW Health adult cystic fibrosis program, told Healio. Read the full story in Healio.
NASHVILLE, Tenn. — Roughly one in 10 adults with cystic fibrosis also had a diagnosis of heart failure, according to a real-world study of patient medical records reported here.
Among the roughly 15,000 cystic fibrosis patients, acute myocardial infarction (MI) and atrial fibrillation (Afib) were the other most commonly identified cardiac disorders, each present in about one in 20 patients in the analysis presented by Andres Cordova Sanchez, MD, of SUNY Upstate Medical University in Syracuse, New York. Read more in MedPage Today.
I grew up with cystic fibrosis, so I am no stranger to hospital stays, downswings in my health, and everything that goes along with that. But facing transplants presented me with an entirely new set of challenges.
My background is fairly normal – I grew up in a large family in Brooklyn, NY, where my parents encouraged my siblings and me to get involved in sports. Little did they realize, that would help save my life. Living with cystic fibrosis meant that my lungs constantly built up with mucus and bacteria, but exercise helped my body become strong and to clear my lungs. Read the full story on UNOS.com.