Tests after a recent incidental finding have concluded with a diagnosis of bilateral- partial anomalous pulmonary vein connection /return (PAPVC or PAPVR).
Now on the list for open heart surgery and repair so would love to hear from any others with this diagnosis-
Hi AngelameeSorry to hear about your recent diagnosis but it must be good to finally know what's wrong. I don't have the same congenital defect but I was born with congenital heart disease, (coarctation of the aorta, had it repaired at a day old. I also have a bicuspid aortic valve severe aortic regurgitation and moderate stenosis and a perimembranous ventricular septal defect) . I was born with all of this so didn't really process it properly till I was old enough to understand what it meant and what it meant for my future. I will need valve replacement surgery eventually. Have your team said when your surgery will be or that your just on a list??
Wish you all the best for your preop and surgery and any tests you may need leading up to that. 😉❤️
thank you for your message and hope you find others with similar configuration- there are so many!
PAPVR appears to be rare so I am keen to know if anyone else with it had tuned in here. Best of luck with your progress.
Hello,
There is a support group for adults living with inborn heart conditions including congenital heart disease.
The Sommerville Heart Foundation.
They maybe able to connect you with other patients in your situation.
I wish you well for your upcoming surgery.
Yeah I follow the Somerville heart foundation aswell. 😊
Hi there,I was diagnosed with this 2 years ago at 60 .Had AF thought to be coming from PFO then an MRI showed that I had PAPVR.As my AF rarely bothers me and I have no other symptoms I have decided to continue with medical treatment only for now.I am having another MRI at 5 years and have a risk of developing pulmonary hypertension and will obviously seek help if become more symptomatic.Its a daunting thought to have OHS but I woukd go ahead with it if necessary. Good luck .
thank you. I have no symptoms but more than one anomalous pulmonary vein apparently.
Tricky decision when there are currently no symptoms- anyway it’s helpful to hear the experience of others so thanks again for response.
I’ve had reassurance about pulmonary hypertension for the moment but based on that risk- I am leaning towards the surgery being offered by the Adult Congenital Heart team.
Sorry to hear of your diagnosis. All I can say is what many have said. Look up the Somerville heart foundation. Which was recommended by my adult congenital heart nurse. I assume you are under a team at a hospital for adult congenital heart issues.? The biggest issue I find is anxiety. Which is an on going process. The biggest advantage is that it has been found. So medication and possible operations can restore the problem. I don't have your problem. But I do have a congenital heart issue which was found very late in life. But it is a challenge and you must try to not be hard on yourself. Sorry I can't be of much more help.
thank you. I reassure myself and others that I’ve lived this long with no problems so quell the anxiety.
It is a problem tho- makes you more cautious I think.
if I’d known I had it when younger….it might’ve stopped me taking risks. I wouldn’t have climbed mountains, trecked the Amazon etc
Anyway- I hope you keep symptoms at bay and keep living the good life!
That's one way to look at it. We have all done things which if we had known would have stopped us. OK I might not have climbed mountains. Or run marathons but I had done lots of interesting stuff. But now I know, God it is hard. It has really slowed me up. But the anxiety is the worst part. How do you reevaluate the situation. How do I go back to before I knew? Then the why me gets into my head. My cardiologist said on my last visit you look well I don't want to see you for a year, but I carnt take that as a positive. I suppose iam still grieving for the person before I knew. But that person had subtle symptoms which I never put 2 and 2 together. I suppose we all have to find away of adapting and changing the way we think. But you do have to keep moving forward, and living a good life.
Congenital heart defect.
Newly diagnosed with heart failure
Newly diagnosed cardiomyopathy 
mental health support for children with a Congenital Heart Defect
