Congenital heart defect.

[Tctb]

Has anyone heard of papvr a rare congenital heart defect I have just been diagnosed with but my gp and cardiologist I only seen today doesn't know anything about this defect. So who will help me? I'm desperate now need some advice feel I'm going crazy! X

[Galileo]

Hi Tctb

I don't have any experience of this condition myself, but there is some information on the internet, such as at mayoclinic.org/diseases-con.... It seems the condition is also known as PAPVC, so I'd search online for that term as well as PAPVR.

I hope your GP will be able to put you in contact with a more clued up cardiologist.

All the best

Richard

[Hidden]

Another source of information mentioning this conditions being discovered in an adult. I would hazard a guess that this is a childhood condition possibly discovered in neonates. This may explain why those who deal with adult cardiac problems might be ill-informed about it.

[Milkfairy Heart Star in reply to Hidden]

About half of congenital heart problems are now detected in pregnancy.

Every pregnant woman in the UK is offered an ultrasound at 20 weeks pregnancy to look for structural heart and any other problems.

[Milkfairy Heart Star]

I suggest you ring the BHF helpline. The Cardiac nurses are very knowledgeable and helpful.

bhf.org.uk/informationsuppo...

0300 330 3311

There are specialist units in the UK that provide care for adults who were born with structural heart problems.

Good luck

[Midgeymoo17]

The simple answer to this is you need to see a cardiologist who specialises in congenital heart disease. NHS England protect the for all adults with congenital heart disease to see a specialist cardiologist once in there life. I have attached a link to the list specialist units/cardiologists. Go to your GP/current cardiologist and ask for a second opinion from one of these clinics.

thesf.org.uk/our-community/...

Attached to each clinic is a level number- do not worry about this at this point. Level 1/2/3 you can be seen by a specialist cardiologist in outpatients and have all outpatient investigations. Level 2 and 3 have well established referral pathways for treatment if needed.

[AngelaMee]

hi

Recently diagnosed with this congenital issue- did you have surgery?