Category Archives: Uncategorized

One of the longest living Heart Transpants Dies

Check this out. He live 30 years with two different hearts. Nick is at 24 with the same heart. http://www.lohud.com/story/news/local/rockland/2015/04/23/jason-blatter-pediatric-heart-transplant/26262899/

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Please Comment

The last day to comment on the policy regarding transplant surgeons and physicians is tomorrow. If you haven’t done so I ask you to please consider doing so. http://optn.transplant.hrsa.gov/governance/public-comment/establish-pediatric-training-and-experience-bylaws-requirements/

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Report on congenital heart surgery outcomes is made available to public

  The Society of Thoracic Surgeons has made public its first report of pediatric and congenital heart surgery outcomes from the Congenital Heart Surgery Database. The report included four-year observed, expected and risk-adjusted center-level surgery-related mortality rates for the aggregate … Continue reading

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Please read and comment

Dear transplant families and friends,  I am writing to you today as a parent of a pediatric transplant patient to request your help in advancing the care of pediatric transplant patients across the country.  The United Network for Organ Sharing, or … Continue reading

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“Little Hats, Big Hearts” Generating an Over-the-Top Response

Volunteers for the American Heart Association and Mended Little Hearts are knitting red hats for all babies born in February at participating hospitals to raise awareness of congenital heart defects. They hope to have as many babies as possible in … Continue reading

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Nick’s Heart Cath

Nick had his bi-annual cath yesterday. He got a good report. The only concern is that his coronaries had narrowed a little. This is to be expected after almost 24 years post transplant. Plan is to put him on medicine that … Continue reading

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New Affordable Care Act Fact Sheets for Families

Created by the National Center for Medical Home Implementation and the Catalyst Center, these four fact sheets highlight provisions of the Affordable Care Act which benefit children and youth with special health care needs. Each fact sheet is written in … Continue reading

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January is Birth Defects Prevention Month

Birth defects are common, costly and critical. Every 4 ½ minutes a baby is born with a major birth defect. Become an active participant in Birth Defects Prevention Month and join a nationwide effort to raise awareness of birth defects, … Continue reading

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Healthcare Provider Understanding of CHD Coping Skills for Adolescent Patients and Their Parents

A recent study in the Journal of Cardiovascular Nursing evaluated and compared adolescent patients’ and their parents’ coping strategies and knowledge of congenital heart disease (CHD). While parents demonstrated significantly higher knowledge about CHD than their children, the authors noted … Continue reading

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New Heart for Hunter

A young man Hunter Cain is waiting on a new heart.  Check out the website and think about helping. www.cotaforhunterc.com  

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