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Questions for surgery :-/

Hi. I'm 18 years old. I was diagnosed with congenital heart disease as a baby and had open heart surgery at 14 months. Since then I have had numerous surgeries to correct different problems with my heart. This coming May I need another open heart surgery. I am extremely scared. I know just about what my surgeon and parents have told me about the whole process starting from the day before to a couple months after. If anybody has gone through this surgery around this age, could you please let me know? Maybe what the whole process was like? How you felt pre-surgery? Post-surgery? How much pain? I have so many questions and so many things going through my head so I'm sure I'll be back on here asking more questions. On the other hand, It'd be great for just some advice from a person who went through this. I boviously don't remember my first open heart surgery... so this is kind of scary, me remembering this surgery and everything. It's all becoming a reality to me now. My parents are doing an awesome job at supporting me and helping me through this. But I'd just like other people's points of views on this....especially someone that went through it. Thankfully, neither of my parents or no one close to me has. So I'm turning to someone here for advice. Thank you!
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Avatar universal
I had a PFO closure via open heart surgery at 24 years old.  So a bit older than you, but not much.   I was scared like you are now prior to surgery.   The morning of I cried all morning until the anesthesiologist took mercy on me and gave me something to 'calm the nerves' though as soon as he gave it to me I was out and don't remember anything until after the surgery way over.

Woke up in ICU.  Felt groggy, tired, thirsty!  Very thirsty!  Someone gave me some ice chips.  I remember a lot about ICU.  I was more alert than most, I believe.  I remember my parents came in, I didn't look so good and they were concerned, but I think everyone looks not so good right after major surgery.  

They put in pacemaker wires in case I had any issues with rhythm but after several days I seemed okay so they pulled them out.  It didn't hurt, you just exhale all the way out and out they go with a tug.  I was released after 5 days - was out shopping with my friends 7 days after surgery!!!!!!!!!!

About one and a half weeks after surgery, I started having troubles.  I kept passing out.  I had a common complication - a parachardial effusion with tamponade.  Fluid built up around my heart and it wasn't able to pump blood efficiently so that's why I was passing out.  Went back to the hospital, they drained it, did another surgery (called parachardial 'window') and was there for another couple of weeks, waiting for the fluid to stop accumulating.  After it stopped, I was able to leave, and that was that. Only 2-3% of people get this complication, apparently, so I fell into the minority on that one.

As for pain, it wasn't too bad but hurt when I'd use my stomach muscles.  Like going from a lying position to a sitting position.  I remember there was a certain way to get yourself up out of bed, they gave me a pillow at the hospital to use to clutch near my chest and 'roll' out so it was less painful.  Other than that process, it wasn't too bad.  The pain meds allow you to be more comfortable and sleep easy.

My best advice to you is to have people keep you company.  My family left me to the hospital staff to care for me, but I really could have used some visitors to cheer me up and boost morale (and bring in food that isn't hospital food!).   That really helped me when my friends would stop by and comb my hair for me or chat with me about stuff.  

It can be a bumpy recovery but you have youth on your side (as did I) which is invaluable.  You will recover more quickly and bounce back easier because you are so young.  Most people today are shocked that I ever had open heart surgery.  Just a few mos after surgery I was working out vigorously and back to normal physically.  I'd say the toughest part of all of this is the mental anguish it causes.  Keep that in mind, don't try and be too stoic - cry if you need to, talk to someone if you need to, it helps a lot.  

I wish you the best of luck and the speediest of recoveries from your surgery.  Things have really advanced since your first surgery, so you might have an easier time of things this time around.   Hang in there!
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Avatar universal
Hi there

I thought that i would reply to tell you that you are definately not alone in this and that there are loads of people out there who you can talk to that have been through similar experiences.

I am a 25 year old with very complex congenital heart disease.  I have had 5 heart operations.  My last big operation was at 13, so I remember it very well.

I dont think i was as worried then about operations as I am now that i understand it all better as an adult.  i didnt really know what i was getting into.  When i have to have operations now, I think i feel about every emotion you can feel before hand.  Happy that it might make me feel better, scared, angry, guilty.  

I remember very little pain last time i had my chest cut open, i think they give you very good drugs.   The only thing i remember from the few days in intensive care are faces, and some brief moments of conversation.  After i was returned to the ward, i remember that my particular recovery was quite bumpy at times, because I have a very slow heart rate things took a bit longer to recover than i expected, but I think that the actually having to be in hospital, and all the inconvenience of having to take it slow for a while, was worse than my actual experience of the operation, which i barely remember.

Good luck
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