OOPs wasn't expecting this - British Heart Fou...

British Heart Foundation

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OOPs wasn't expecting this

SinbadCFC profile image
10 Replies

Hi everyone. I thought my story my be of interest to anyone have an Atrial Septal Defect (ASD) repaired.

Admitted to St Thomas's on 7 September for a trans catheter closure of the ASD. Usual warning with consent form etc. Woke up after procedure and told earthing went well. I had to lay still to stop the wound in my groin from reopening. Later that day I had an ultrasound scan to make sure all was well. Eventually discharged by ward sister about 8pm. However, I had not seen a Doctor post procedure to discuss anything.

Travelling home by Tube and when I could get a phone signal, I had numerous missed calls from the hospital. Called them back and was told to immediately come back to hospital as they could not see the closure device on the scan and needed to check its position.

I returned to hospital where I was taken for an Xray followed by a CT scan. It turns out the closure device had moved and was now sitting in a pulmonary artery. I was told that I was an emergency case and would have to undergo open heart surgery to repair the ASD and retrieve the closure device. Early next morning I was taken to theatre, and a had chat with the surgeon (who was very reassuring). Next thing I remember was waking up in the intense care unit with drains and other things sticking out of me.

My head was all over the place for the first 2 days (weird dreams, panic attacks etc). But the good news is that over the next few day things improved and I could begin to move about. Eventually discharged 12 days later and since I have been recovering from home. I have progressively become more active and stronger although I am still a bit breathless.

Disappointingly, I was supposed to have a follow up appointment with the surgeon within 2 weeks and the Adult Congenital Heart team around 6 weeks post surgery. No contact yet but I am chasing them up

Now on a cocktail of tablets to control Afib which was brought on by the surgery.

Sorry for the long post but I wanted to show that even when things go wrong there is still a way forward.

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SinbadCFC
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10 Replies
10gingercats profile image
10gingercats

What bad luck. I had a closure 10 years ago under sedation.No problems other than discomfort and the occasional need to top up the pain with morphine.I do remember there were a lot of checks before they actually moved the device into place.

SinbadCFC profile image
SinbadCFC in reply to10gingercats

Thank you 10 ginger cats. As I understand it my device moved after the procedure. My groin was uncomfortable for a number of days but the heart surgery took my mind off of it lol.

Hello & Welcome :-)

I am so sorry what you went through it was quite an experience and can imagine took some getting your head round but I am so pleased that you are now starting to feel better and your recovery is going well :-)

Thank you for sharing your experience with us :-) x

SinbadCFC profile image
SinbadCFC in reply to

Thank you BeKind. My hope is that my experience will help others who find themselves in a similar position.

in reply toSinbadCFC

Hello :-)

Even though we do not wish anyone to go through what we have been through you are right it is good to post about it because it could help someone that might find themselves in the same position

I hope you have a lovely day :-) x

Letsallhope1 profile image
Letsallhope1

hello,

I’m so sorry to hear that the hospital discharged you obviously too early and there must be some kind of misunderstanding with min your medical team.

Regarding the time in ICU I had the same awful experience, it is your reaction to morphine and I reckon it is to do with the fact that you were not in a serene set of mind when you went down to theatre for open heart surgery.

I spent over a week in intensive care and I became paranoid, convinced that they were moving me around and at night the nursing staff were killing patients.

I must have been such an awful patient until they weaned me off the morphine 😂

Take is super easy now, it took me about 3 months after open heart surgery to recover properly and every time I was trying to do a little too much than what my heart could cope with I was getting loads of palpitations.

I wish you all the best from now on

SinbadCFC profile image
SinbadCFC in reply toLetsallhope1

hi Letsallhope1. Sounds like we had the same sort of experience post surgery. I was also convinced that the nurses were trying to kill me and even more weird that we had been invaded by an army that was going round shooting all the heart patients.

I had a very long and informative chat with my cardiac nurse on the 3 day and his Irish sense of humour brought me back to reality.

Thank you for your best wises

Letsallhope1 profile image
Letsallhope1 in reply toSinbadCFC

hahaha, you’ve been more creative than me.

Luckily the nurses at the Royal Brompton Hospital were very understanding and patient too.

A while ago I read a very interesting article explaining how modern medicine recognise the incredible emotional stress of being in ICU and specialists are trying to understand how this issue can be addressed so that the patients can live the ICU experience in a more relaxed way (which of course help with the recovery too)

I don’t plan to visit ICU any time soon but I hope things will be better soon

Gumbie_Cat profile image
Gumbie_Cat

Goodness, you’ve been through the mill! Such fantastic positivity in your post - I’m sure that will help with your recovery. I should learn from that when I get very grumpy about my A Fib.

SinbadCFC profile image
SinbadCFC

Hi Gumbie_Cat. It took me a while to come to terms with what happened but at least I didn't have time to get too nervous before the surgery. I wish you all the best with your A Fib

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