Quantcast

Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

PAPVD - info appreciated, by midlifer with mutant veins!

Hello and thank you all, the experiences shared here are already really helping me. My first post, pls advise me if I should do things differently.

A bit about me - I’m 50 (hence mid-lifer name!), and just got diagnosed in Nov with sinus venosus ASD (it’s about 2cm, with a “severe” shunt). I’d had dizziness on standing (5-10yrs, I ignored, assuming low BP), then palpitations for ~3m (ignored this too, as I’d heard the menopause (my new best friend!) can trigger them). Then I had palpitations + unconsciousness, so underwent ECGs, echos, a cardio MRI and most recently an angiogram, which confirmed the SV ASD + other stuff.

I’ve learned alot from others here with ASD, thank you.

What I’d like to learn anything more about is

(A) PAPVD - partial anomalous pulmonary venous drainage. As I understand it, 1 of my 4 pulmonary veins (bringing oxygenated blood to the heart from the lungs), doesn’t drain into the left atrium like it should. Instead it is draining into my right atrium, somewhere near my ASD hole, and is thus adding more blood to my already enlarged right atrium / ventricle. So that’s mutant vein 1, which seems to be needing fixing.

(B) Mutant vein 2 appears to be an additional vena cava! I hear we’re born with two of these, but the left one typically “disappears” in infancy. Mine has stayed (“persistent” they call it !). Having heard from Doc that my (normal) right vena cava is a bit “weak or thin” or something, I’m speculating that the right vena cava hasn’t grown strong because some returning blood is flowing in the other vena cava. I don’t think this is as problematic as the incorrect pulmonary drainage in (A) above, but it sounds like the weaker right vein is going to need “strengthening” during my OHS - I think the Doc said something about a patch or a “baffle” or something.

Any experiences anyone could share on any of these would be greatly appreciated:

  • PAPVD & correcting it
  • persistent left vena cava
  • weak / thin right vena cava
  • having a vena cava patched during OHS.

Once again I want to say a huge thanks. I’m currently terrified & any info helps one manage one’s expectations. Got loads more questions, this is the most technical. If I have missed good info elsewhere on the site or elsewhere, pls feel free to re-direct me. Meanwhile I wish you all the best outcomes possible.

thank you all, from a mutant mid-lifer ! (trying to keep my sense of humour, kinda).

Hello

I had surgery in October 2017 to correct a sinus venosus ASD, secundum ASD and PAPVD.

My right ventricle was 4 times the size it should be.

My one year check up showed my heart with normal function and my right ventricle getting smaller in size.

My surgeon referred to the PAPVD as “naughty veins” that were a “nuisance” but not as serious as other defects of the heart

Hope this helps

Best wishes

Laura

Hi Laura
Sorry I didn’t reply at the time, but this helped me, thank you.
It turned out my anomalous vein was inserting right next to the SV ASD and making things worse (putting even more blood into the right), so they put in a second patch (bovine) to redirect it.
My right ventricle was spookily also 4x the size!
All has turned out Ok, the hole is closed and the vein redirected, so apparently I have no shunt now (awaiting 6 wk check up to be sure)
Thanks again for replying, you helped ease my mind.
Lisa