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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

Anyone waiting on an OHS?

Hi all, one of our newest members, Carl (@Yalpe), is currently waiting on an open heart surgery after atrial fibrillation lead to an ASD diagnosis. Is anyone else currently in a similar position? It would be great to have also those who have had an OHS share their experiences!!

Thank you,
Arjuna from ModSupport

Hi Carl.
I previously had to wait for my OHS after a SV-ASD diagnosis. What questions do you have?

Here’s a few things I found useful:

  • if UK, exercise your right to choose which hospital for surgery.
  • make friends with the surgeon’s secretary !
  • try to get a call/ meeting with surgeon after your tests, that puts you in their radar & they may hunt what timing might be likely (I got “not for at least 3 mths, maybe April onwards”)
  • ask secretary regularly about surgeon’s current surgery pipeline & where you might fit into it
  • explain any wider constraints you have eg kid’s school holidays, availability of support.
  • use the time to get safely fir for surgery, in whatever way the consultants suggest. Mine was exercise up to heart rate 140 &great to lose some weight !
  • also use time to mentally & practically prepare -I had some counselling, bought pyjamas & pillows!
  • get prepared for a tough mental journey, as much as physically

Let us know what’s on your mind, there will be someone here willing & able to help. It’s natural to worry, however may help you to know that 10 months on from OHS, I look back and think how blinking lucky I am to have been diagnosed & treated, tough though it was. Best of luck

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  • on their radar and *hint not hunt !

I had a catheterization to close a defect back in March, but it was unsuccessful. I am now awaiting a call to schedule a meeting with the cardiac surgeon to discuss OHS. There is a small chance that he will decide to re-attempt closure via cath, but my pulmonologist, who has been driving all of this (he has been managing my hypoxemia), thinks OHS is more likely at this point.