CHD pulmonary atresia need new pulmonary valve

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Leighanne

I am 32 and had repair of pulmonary atresia at birth and experienced no problems until December 03 and I already need pulmonary valve replaced and ring placed in tricusipd, and MAZE procedure, and decrease in size of pulmonary artery. I am looking for those who have had similar problems and what you have researched about pulmonary valve replacement and the issues surrounding it. I am having my surgery Mary 11th 04, 4 weeks at Childrens in Boston MA. Anyone with info please reply as I am freaking out about some of the info about my "condition" life expectancy, surgical risks etc. Please reply
Leighanne
 
Leighanne,

I can't really help you with the technical stuff, but I recently had a Ross Procedure done and they put a homograft (cadaver) valve in my pulmonary valve position (they used my healthy pulmonary valve to replace my aortic valve). From what I understand, the homograft pulmonary valve should last a long time. Sorry I can't help you with the other stuff. Hopefull someone will come by who has more experience with what you're dealing with.
 
Leighanne,

I have Tetralogy of Fallot and have undergone the Pulmonary Valve replacement (porcine) over a year ago at Mayo Clinic In Rochester. Also, they dilated one of my Pulmonary arteries at the same time. I was also scheduled for the tricuspid repair, but after they fixed the PV the TV looked fine. If you have any specific questions, feel free to private message me and we can "talk" in more detail. If you haven't aready done so, a great place to visit with others that have congenital heart defects is www.achaheart.org//index.php.

Vlamus
 
Hey, welcome. =)

Sorry I don't have pulmonary artesia like yourself, however I do have a nice little CHD, (transposition of the great vessels) and last year I had my tricuspid valve replaced with an artificial valve after my heart quite literally tanked, nearly taking me with it.


I was like you, symptom free for most of my life before things started going south about 3 years or so ago. No complications whatsoever after my initial surgery as an infant.


My advice to you is this: Don't worry so much about long term prognosis and life expectancy. To be honest, there isn't a real good answer for it. everyone's different, valve choices are different, health conditions are different, follow up treatment, lifestyle, eating habits, genetic predispositions....

I have a mechanical St Jude's valve in my chest. It clicks happily away and I prefer to think believe (KNOW?) that it will for a very VERY long time as long as I take care of myself.

The valve hasn't been inexsistance for thirty years. They say it should last me a life time but how can they know that if it hasn't been in use for that long?

My valve will last as long as I need it to last, that's all that matters. =)


There's a lot of good reading here and a few people with CHD's that may be able to relate better to your condition than I. Plus someone else posted a good site for CHD information.

Hang in there. If you haven't had any trouble until now chances are your heart's pretty strong. Mine was and still is. That's a plus.

Learn what you can and try hard to keep a positive attitude. =)
 
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