Hi Abigail, no we’re not old, we’re in our prime! I’m 50, last Nov I was diagnosed with a large sinus venosus ASD and a pulmonary vein inserting to the right not left, so had a big shunt and a very large right side of heart. Had OHS 3.5 wks ago.
Your fear is totally understandable & I had it too, OHS is terrifying, but you will get through it. Ask away with questions here, people helped me a lot.
Here are some things that helped me
A. Serenity prayer principle (accept what you can’t change, know the difference from what you can change). My fear decreased when I realised I had to “start” from reality (I’ve got a defect) and stop wishing it wasn’t so. Sounds easy, but it wasn’t at first. I felt sorry for myself, and i began to let that “define” me. When I finally accepted the defect, the internal debate changed to “what do you want to do about it?”. At this point, OHS was clearly better than leaving the defect in place, so I gained some sense of “choice” (based in reality) & this helped the fear be in proportion to the benefits.
B. Physically, I tried to prepare my body, but gently - did more yoga to de-stress and strengthen muscles without straining heart, did tiny bits of walk-jog within Doc’s heart rate advice (he said <150bpm for me), took my vitamins.
C. I got organised. From advice here, I bought lots of pillows, borrowed a recliner (tho that doesn’t work for me), figured out family sleeping arrangements to be in bed alone initially, got eye mask & ear plugs for hospital, bought post surgery bras, etc. In reality, little of this was high priority (except ear plugs, buy several pairs, hospitals are noisy!) but it gave me something to do & a sense I’d done something to help myself.
D. Trust the Docs, as far as seems appropriate. So long as you have a good specialist congenital heart defect Doc/team, they know what they’re doing and have done it many times. It’s routine for them, even if it’s ‘major’ for us.
E. Think in advance about what will matter to you. For me, I wish I’d discussed pain relief in advance, to better balance managing pain with being scared of getting addicted. A few times, I haven’t take enough pain meds and have gotten overwhelmed. I learned to get good relationships with the nurses and stand my ground - I needed pain meds at 5am to be able to get enough sleep, and had to persist to be given them outside of normal medication rounds - it made a great difference to my ability to rest.
If it’d be useful for you to hear more about an OHS & what it feels like after, feel free to add further Qs, I’m not sure if I’ve focused on what you raised or not