I Have Congenital Heart Disease, Diagnosed When I Was a Baby Now Im16 I Want to Know What Will Happen?
Question by Bobs your uncle: I have congenital heart disease, diagnosed when I was a baby now im16 I want to know what will happen?
in the future. I am really scared. will i need further surgery? if so what surgery and how major is it. Will i die when i’m older, will i need a transplant. please don’t sugar coat it for me I want the truth no matter how bad it is, and what has happened to other people. don’t like talking to anyone about it so I won’t ask my mum or dad etc. And when would my heart start failing etc. I want to know statistics aswell. My diagnosis was double outlet of the right ventrical TCPC and I have vocal cord palsy as result of the TCPC so I sound like that mafia boss in scarface lol
I think its known as fontan surgery aswell
Best answer:
Answer by Rebecca B
Hi, I’m 14 and I was also born with severe complex congenital heart disease.
Really the only person who can answer your questions is your cardiologist, tho you ought to be able to get some more general info. from somewhere like lhm or the Somerville Foundation:
> Little Heart Matters (specialise in single ventricle heart defects) @ http://www.lhm.org.uk
> British Heart Foundation (BHF) @ http://www.bhf.org.uk/heart-health/conditions/congenital-heart-disease.aspx
> BHF’s website for teens with congenital heart disease @ http://www.yheart.net/default.aspx?page=431
> The Somerville Foundation (for adults with congenital heart disease) @ http://www.thesf.org.uk
It’s hard to know what the future holds for those of us with single ventricle defects (I’ve got HLHS rather than DORV) as we’re really the first generation who has survived long enough to make it to adulthood. According to the BHF the oldest survivors of DORV are now in their 30’s, so as long as you can stay well there’s no reason not to think you’ll do the same. Actually the cardiac team at GOSH* have done some research that says of all kids born in the UK with congenital heart disease 1,460 kids died before their 16th birthday in 1959 but by 2009 the number of kids dying before their 16th birthday had dropped to just 159 ( http://www.gosh.nhs.uk/news/press-releases/2012-press-release-archive/study-highlights-success-of-50-years-of-modern-medical-interventions-for-babies-with-heart-defects ). The future is brighter than it has ever been for heartkids like us…and it’s getting brighter all the time.
No-one can tell you when, or if, your heart is going to start failing (no chrystal ball!). It may happen, it may not. If it does happen there are drugs that can help. I’m in heart failure, have been for about 2 years now, but I get by on medication.
Currently, if you need further surgery, and you’ve already had the fontan, your only option is a heart transplant, unless it is something that can be corrected with something simple like a pacemaker. Things change though, and in 5 or 10 years time there may be other surgeries that have been developed for kids like us. GOSH* is currently working to develop stem cell treatments so that in the future heart defects will be repairable without any surgery at all.
*GOSH = Great Ormond Street Hospital
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