New Member & recent diagnosis

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New Member & recent diagnosis

Postby nicolab » Sat Jan 10, 2015 11:41 pm

Hi. I am 43 years old and after feeling off and generally unwell on and off for approx 10 years I finally got a diagnosis of PAPVR of one vein. This was discovered when an echo showed right side enlargement. I was referred to CH specialist after being told by cardiologists that I would need corrective surgery to prevent heart failure. I had a TEE and other tests in Dec and I was briefly told they can't operate due to the position of the veins. It would not make me feel any better by operating and it is too dangerous. I am gutted that there is no solution and am waiting for my appointment in a few weeks to discuss where we go. It is all very daunting. I have a stressful job and am worried how this condition will affect me in the future. I have definitely struggled for the past 2 years with breathlessness and severe fatigue and do not have much of a social at present as I fall asleep as soon as I get home! Has anyone out there had PAPVR diagnosed in adulthood and also could not be operated on?? Were you able to continue working and how have you managed and coped with it? It is all very new to me and I'm putting on a brave face for my two children and husband but inside I'm very stressed about it all....
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Joined: Sat Jan 10, 2015 11:04 pm

Re: New Member & recent diagnosis

Postby Tricky Dicky » Thu Jan 15, 2015 11:34 am

Hi Nicolab, welcome to the forum. I've never heard of PAPVR so can't help much. You could try on the British Heart Foundation (BHF) forum or the Adult Congenital Heart-disesase Association (ACHA) forum.
Tricky Dicky
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Location: Camberley

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