Svetlana Shugh
Svetlana Shugh, MD, FAAP
Joe DiMaggio Children’s Hospital
The Pulse — February 2022
We hope you all had a wonderful VADentine’s Day! We are looking forward to ISHLT in April, and our meeting location has been confirmed. We will send more reminders as it gets closer, but please note the ACTION Meeting at ISHLT will take place on April 26, 2022, from 3–6pm in Room 312 at the Hynes Convention Center. The meeting is open to any ACTION members attending ISHLT. We hope to see you there!
Contemporary provider management practices and attitudes towards referral for advanced heart failure therapies in Fontan patients across North America
“Contemporary provider management practices and attitudes towards referral for advanced heart failure therapies in Fontan patients across North America” aimed to understand practice variations among Fontan caregivers, referral for advanced …
The Pulse — January 2022
We hope you are all having a safe and healthy start to the new year! We are very excited to share that we submitted 9 ACTION abstracts to ISHLT, and all 9 abstracts were accepted! Details below and congratulations to the many authors and co-authors. We are also pleased to roll-out a new focus for our Discharge & De-Escalation project in which we will collect and review listing criteria at the time of transplant listing for VAD patients. We are also hopeful that we will have our first in-person meeting at ISHLT in April – stay tuned!
Finding Heart — Juliana’s Story
At 11 days old, Juliana waited for a new heart while her mother, Riki, fought breast cancer. Together as mother and daughter, they faced unexpected challenges, braved mounting treatments, endured long waits and recovery. Now, Riki shares their story in thanks to the community of support they found along the way.
The Pulse — 2021
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Significant Variation in Exercise Recommendations for Youth With Cardiomyopathies or Fontan Circulation
Routine physical activity has been increasingly regarded as important for youth with cardiomyopathies or congenital heart disease with heart failure, including Fontan circulatory failure. This ACTION publication shows results of …
Finding Light in the Dark: Brynn’s Story
One weekend, Jimmie noticed his 16-month-old daughter, Brynn, was breathing strangely. One week later, Brynn was heading into surgery to be placed on a VAD. For half a year, Jimmie and his wife, Kristyn, waited by the phone for the transplant call. The family had many long nights, learned how to navigate their lives with a VAD, and finally reached the end of a dark tunnel.
Learning networks in pediatric heart failure and transplantation
“Learning networks in pediatric heart failure and transplantation” was published June 17, 2021 in Pediatric Transplantation. This ACTION publication defines “learning networks” and how they’re different from traditional clinical research …
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