Coping with PTSD after open heart surgery at 23

[Kells94]

Almost 2 years ago I had open heart surgery to replace my aortic valve with a cows valve. I was 23 at the time. I was born with a bad valve and had surgery at 5 days old to repair it but I can’t remember that one obviously. I always knew I would need the valve replaced when I was older but it didn’t make it any easier. When I went in for surgery something went wrong and I nearly died, they tried to get my heart started again 2 times and then eventually got it going with a balloon pump. Later down the track I found out that they almost put me on an artificial heart machine which means a heart transplant.

after the surgery I was put in an induced coma for 24 hours and then recovery began. I have never been in so much pain, my chest had been sawed open and my ribs broken. Everyone around me in the ICU was 70 or older and looked to be dying. I have always suffered with anxiety from a father with anger issues and being bullied at school and other heart problems but in ICU at one stage I felt so strongly that I couldn’t breathe that I almost considered trying to walk out of the hospital just to make them see how panicked I was. Come say 5 I started to get some relief but then for a month at home I slept sitting up and was in 10/10 pain all the time.

eventually my body healed and I think everyone was really surprised at how quickly I was out and about. I then fell into really self destructive behaviour. My boyfriend at the time had cheated on me about a week before surgery so I didn’t really care about my actions at the time and would drink and party I guess without knowing suppressing my feelings.

my sister is also an ice addict and went back to it while I was in hospital and then verbally abused me and left the week I got out and didn’t come back for 8 months (at the time I felt like she would never come back and would OD so was processing that too)

about 4 months after the surgery I would have break downs and visions of being in ICU and also my sister leaving and would just cry alone and think how could anyone understand. Later down the track I discovered it was ptsd and went to see someone which really helped

about 4 months ago I found out I will need open heart surgery again in June this year because the valve isn’t working right. I’m so scared I won’t be so lucky this time. It’s on my mind all the time especially before I sleep. Has anyone experienced this? Also does anyone have a way to try and drown out the thoughts before bed?

[Tay100]

Hi Kells94

Welcome to the forums- we are glad to have you here- but we know that posting can be daunting, too. So well done.

Surgery trauma can be really hard to process and move on from as there is always a physical reminder of it, I feel. And my goodness, apprehension about surgery is just something else, huh? You aren't alone in experiencing it- I understand how overwhelming it can be. Adding past/present family and ex-boyfriend issues mustn't make it any easier for you, either. I hear you.

You say you are seeing someone to help you deal with this trauma, could you talk to them about your apprehensions about the upcoming surgery if it has worked for you before? Perhaps about your sister also? Do you have anyone else around you to support you in your day to day life? We can provide a listening ear and point you in the direction of great resources of how to manage PTSD on an everyday level, too.

As for drowning out thoughts before bed, I know how it feels to want to do this. What has worked for me is getting out of my head before bed. Light stretching, drinking a strongly flavoured tea, and cuddling with my dog helps me focus on calming my body down and engaging with my senses, which helps me decompress before bed. Do you have things you do to relax you? Could you adapt them into a bedtime routine?

Sending kindness and calmness to you during your time of apprehension,

Tay100.

[Kells94]

I stopped seeing the Counsellor when I thought my ptsd had gone away and it didn’t really bother me until I found out I would have to have another one. My biggest fear is saying goodbye to loved ones and not waking up.

I live alone and my body corporate doesn’t let me have my dog but I might try drinking tea before bed and putting my phone away earlier so I fall asleep quicker

thank you!!

[Tay100]

Hi Kells94

Glad I could be of some help, and I hope those strategies help you. Shame about the no dogs policy- a really nicely scented heatbag may provide the same effect (I'm such a grandma haha).

But seriously, I know that fear of not waking up can be incredibly all-consuming. Perhaps resuming counsellor visits or even just seeking out an online mental health chat service may be good to engage with up until the surgery, s you can process that fear in a healthy way? Let us know how you go.

Tay100

[LexiJane]

Hi Kells,

Thank you for sharing your story. I cannot imagine what you are going through with your upcoming surgery. I would also have suggested a dog, but is there perhaps another 'critter' you could bring into your home? Even something as simple as a fish or bird? I too live alone and find that the birds that visit my balcony have really helped me get through the tough days. I also suffer from 'genetic' anxiety and sought help from a doctor within the last year.

Have you thought about asking your surgeon or nurse about a support group for people in your similar situation? Though the people around you at your last surgery were older, there are definitely people out there going through something similar.

Depending on your love for animals, it may also be worth while visiting a zoo or a rescue centre once they are back up and running. Animal therapy has worked wonders on myself.

Stay healthy and never be afraid to ask for help ❤️

LexiJane

[Meldunmall]

Hi Kells94,

I had open heart surgery at age 25. Had two ASD closures (holes in my heart) that were found by accident when I applied for Vic police. I went down a rabbit hole of procedure after procedure, surgery after surgery within 5 months. I was fit and healthy prior to the surgery, since then I haven’t found my rhythm.

When you said you were the only one aged 23 in the ward, that hit me hard. The woman I was in the hospital next two was in her 60’s, I went to rehab and everyone asked me who I was here to support, their jaws dropped when I said I’m the patient. I had no family to rely on either.

I still don’t know how I feel about it all. I still think about how helpless I felt, how one minute I was fine and the next I was on life support. It stays with you!

I couldn’t lay on my stomach for two years after my surgery, the pain was unbearable. I still get pain in my ribs from it. I didn’t have a sternotomy, they did a “non invasive” entry through the right side of my body.

It’s nice to know I’m not alone in this. Reach out if you want to chat more

[LouLouS75]

Hi

I just saw your reply post to support Kelli, your story resinated with me and I hope you don’t mind me contacting you?

What you’ve been through sounds like a lot and you’re strong for trying your best to get through.

Im 45, so I'm older than you but I’m a young 45, very active and have been told young is really unusual and I’m a rare case. I go in for my first aortic valve replacement in November and they are planning the ‘non invasive’ option. I have a family history of this having to be done but my mum passed away a few years ago so I can’t gather her experiences… My sister had replacement last year but she’s older than me and not a great communicator about it- but I’m struggling with not being able to talk to people who are young and had to deal with this …. So I was hoping I could touch base with you and compare notes or ask questions??

I hope you’re feeling better as time goes on.

Im in southern Sydney.

anyway…. Just checking in.

thanks

Lou

[LouLouS75]

Hi Kells

I just saw your story.. you’ve been through a lot.

im 45 and heading to my first Aortic Valve replacement in November.

Wondering how your June operation went?
hoping your recover was smoother?

I have been told that my age is rare for this condition so I’m looking out for some young people who understand and can support each other in ways.

Thanks for posting and putting your feelings out there, it means a lot to know that one isn’t alone, so thanks for putting your story out there.

Louise