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!!
Arjuna from ModSupport
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
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.
I was dx more than a year ago and still waiting. They still havent told me if its going to be ohs or cath.
Im not sure if 31mm is not serious or that its taking so long because of the current covid situation.
Mine was found by chance
Hi There! I found out last week that I will need open heart surgery for my ASD. I am in the US. I’m scheduled to meet with a Adult Congenital Heart clinic and surgeon this week. I will keep you posted.
Welcome, Traci in Florida! Do keep us posted: how quickly are they going to do this, I wonder?