The 2014 Adult Congenital Heart Association’s (ACHA) 7th National Conference, Translating Quality of Care into Quality of Life, offers the unique opportunity to unite the adult congenital heart community – patients, family members, researchers, and healthcare providers – in one location to share the best in adult congenital heart defect research and resources. This year’s conference is scheduled for September 5-7 in Chicago, Illinois. Registration is open and more information can be found on the ACHA Website.
The Center for Health Care Transition Improvement – Got Transition recently released The Six Core Elements of Health Care Transition (2.0), which define components of transition support and are based on the clinical report, “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home“, developed by the AAP (led by the Council on Children with Disabilities), the American Academy of Family Physicians, and the American College of Physicians. Three transition tool packages are available for: 1) practices serving youth who will transition out of pediatric care into adult care; 2) practices serving youth who will remain with the same provider but need to transition to adult-focused care; and 3) practices accepting new young adults into adult care. Each package includes sample tools that are customizable and available for download.
The Centers for Disease Control and Prevention (CDC) launched a new Website on congenital heart defects (CHD). The new site provides information and resources for individuals, families, health professionals and others about CHD basics, screening, research and tracking, data and statistics, and specific types of heart defects. The Website features answers to common questions about CHDs, information about how the heart works, the latest CHD news and scientific articles, and an updated look and feel.
Nick celebrated his 23th year with a heart transplant this week. He says the longest living made it 31 years and died of old age. He wants to surpass that and more. I want that also.
Thanks everyone for the prayers and support. And thanks to the doctors and nurses that have cared for him and most of all to the donor and donor family.
Nick and Lacey had their first wedding shower last Sunday. It was wonderful. Ginger, Carole and Chrissy did a wonderful job and everyone seemed to have a great time. I know Lacey was tickled over her gifts. A bride always enjoys being the center of attention.
The wedding plans are moving along. On my front I have my dress and am working on getting my shoes. We have a busy and exciting next few months.
Zach had a mole removed from the back of his neck a month ago. It came back a malignant melanoma. He had to have surgery to remove two inches in each direction around the site and take out some lymph nodes. After waiting to see a surgeon in Cartersville, working around the bad weather every two week and finding out that he really needed to go to Emory, he had the surgery done last Wednesday.
It was far more than I imagined. He has an incision from ear to ear on the back of his neck. Nine inches. But he also has on from behind his right ear to his collar bone. Six inches. He looks awful. The doctor did prepare me that he might have to take a node out from under his arm. That didn’t happen but it will have to be watched. We will not know for another two weeks if the cancer has spread.
It hasn’t been much fun at our house this week.
Nick had his annual check up recently. This was the first visit he has made a trip to Atlanta to the doctor without me. Lacey went with him. How can I say it, yes it was nice not to get out of bed a 5:30 and drive in the dark. To tell the truth I was on the phone and texting throughtout his appointment. I still had to know what was going on.
He was pronoticed perfect. In fact, he was a doctor not much older than Nick who was amazed he was doing so well. Lacey liked the doctor also. Said he was good looking.
My little boy has grown up. And it is good.
Increased neonatal mortality was found in infants with hypoplastic left heart syndrome (HLHS) born far from a cardiac surgical center (CSC), according to a new study published in the journalCirculation (password required). In a first of its kind study, nine years of data (1999-2007) from the Texas Birth Defects Registry was used to examine the effect of calculated driving time from birth center to CSC on mortality among infants with HLHS. The study results suggest that improving prenatal diagnosis, which allows planning of delivery near a large volume CSC, may significantly improve survival in infants with HLHS. The study abstract summarizes key findings and conclusions.