Just when you think it's ok to do some more research on-line .... Here's the abstract to an article I saw last night (I'm trying to get the full article):
"Heart transplantation is usually utilized in pediatric patients with dilated or restrictive cardiomyopathies, or in patients with hypertrophic cardiomyopathies with the hemodynamic characteristics of dilated or restrictive cardiomyopathies. Pediatric Cardiomyopathy Registry (PCMR) data suggests that transplantation is utilized in patients with idiopathic, familial, or myocarditis dilated cardiomyopathies to a greater extent than in dilated cardiomyopathies observed in malformation syndromes, inborn errors of metabolism or neuromuscular disease. Single and multicenter studies suggest that lower left ventricular ejection fraction at presentation is associated with a greater likelihood and a diagnosis of myocarditis to a decreased likelihood of heart transplantation respectively. International Society for Heart and Lung Transplantation (ISHLT) data demonstrates cardiomyopathy is making up an increasing proportion of heart transplantation in infants.
PCMR data suggest that the overall freedom from death or transplantation in patients with pediatric dilated cardiomyopathy has changed little in the past 15 years. However, survival after pediatric heart transplantation has improved over the same time period. Two single center studies have found that while survival with pediatric dilated cardiomyopathy has improved, the freedom from death or transplantation is similar to survival in pediatric dilated cardiomyopathy prior to the routine use of heart transplantation. Furthermore, these studies could find no impact from new medical therapies on transplant-free survival. These findings suggest that heart transplantation may be the most effective therapy for improved survival in pediatric dilated cardiomyopathy. " [Bold mine.]
Ugh. On the positive side, Annie was young at diagnosis. On the negative side, hers (so far) has fallen into the idiopathic (no known cause) category.
On the positive side, Annie is rolling all over the dog bed as I sit writing this, laughing and giggling like a loon. She's practically doing somersaults!
October 12 and the first echo since starting beta blockers can't come soon enough.
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2 comments:
ugh, ugh, ugh! I wish the study revealed different things. When we look at Annie, it is sometimes difficult to remember just how serious her diagnosis is. She makes it too easy for us to believe that everything is just fine, for she is among the happiest of babies we've ever met! Know that we are anxious for Oct. 12th too.
Hang in there!
Love,
Nikki and family
Such studies haven't met the likes of Annie!!! Love you, Mom
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