ASD Closure Questions

[Magnus21]

Hi All

I’m 41 and have been diagnosed with an ASD and right heart dilation. On Tuesday I experienced the joy that was the TOE procedure 😂 and I’m awaiting to hear whether I am a candidate for the groin/catheter device closure or the keyhole surgery. I’d love to ask a couple of questions -

How long is the recovery from the keyhole procedure?

How soon after both can you travel (fly)?

If you’ve had either procedure how long after did you feel “back to normal”? I have a 9 year old daughter, I’m divorced and no family near by - trying to work out how long I’ll need a bit of help for?

Thank you for any advice.

Best wishes,

Emma

[Iheartlego]

hi there

I’ve recently been going through this! I think recovery will depend person to person. Post keyhole procedure I was told a week off work. To be honest I could have done with longer and 4 weeks on I’m feeling better but not totally normal.

With flying I was told to wait 6 weeks which I hope is ok as we are due to go away soon!!!!

Happy to answer any other questions - I know it’s all a lot to take in!! Good luck!!

[Magnus21 in reply to Iheartlego]

Thanks for your message. That’s good to know about your recovery. Post the keyhole surgery how long were you in hospital for? And when you get home are you recovering in bed or can you be up pottering around and doing bits? They are talking about me having it closed before Christmas and I have lots to do!

Im really glad to hear your feeling better now and you have a holiday to look forward to!

[Iheartlego in reply to Magnus21]

Hiya - I was in hospital just for the night - had the procedure under general anaesthetic so was pretty dopey for a while. Not totally bed bound but I have to say the groin incision was sore and made it hard to walk for a week or so (I totally hadn’t thought about that beforehand!! 🤦‍♀️)

[10gingercats]

I had a groin catheter closure 10 years ago and felt absolutely fine the next morning. I had sedation for the procedure and some morphine top up along the way. It was fine. I was in my early 70's at the time. Cannot guarantee yours will be the same but that was my experience in a uk nhs hospital.

[Magnus21 in reply to 10gingercats]

That’s great to hear thank you. I’ve been waiting to hear and the TOE on Tuesday but my consultant hasn’t confirmed yet how it can be closed - I’m really hoping by the groin catheter too. How soon were you back to normal at home?

[10gingercats in reply to Magnus21]

The next morning I bounced out of bed and felt better than I had done for a few years. I took aspirin on cardios advice for 6 months and also Warfarin as I had on/off af ib.Now it is permanent and various other heart issues have happened .It was also found that I had congenetal heart disease with a failing tricuspid valve. It has stopped working now but doctor thinksthis is minimal to my general heart condition of heart failure(heart not working as well as it should).I exercise quite well...walking and on line exercises plus generally keep busy..at 85.

[RumblingChest]

Hello Emma!

I imagine this diagnosis has come as a bit of a surprise, but you are not alone.

I had my ASD closed via groin in July under general as a day case. I had a couple of days off work, mainly due to post op fatigue (and probably stress release) and a week where I built up my walking back to 1+ hours per day. The main thing was to look after the groin injury, they seemed very confident about “the plug” staying put. I started couch25k a couple of weeks after the procedure.

I had some bouts of heart arrhythmia and atrial fibrillation in the 3 months after, peaking at about 6 weeks. Whilst a bit unsettling, it had no significant effect. This has all settled down and I feel total normal now.

I’ve got anti-platlet therapy for a year and antibiotic prophylaxis before any invasive dental work - which for me is mostly the hygenist.

I couldn’t say about flying, I didn’t ask.

BTW - if you drive, you should check the DVLA site and consider whether you need to make a declaration of your condition (and to your insurer). No doctor mentioned this to me, but I felt I fell inside the criteria.

Hopefully you will be a candidate for the catheter procedure - I was told my anatomy was “tricky” but they managed to wiggle it into place.

Best Wishes!

[Magnus21 in reply to RumblingChest]

Thanks for your message, and yes it has all been a bit of a shock to me! Great to hear how quickly you were back walking and then starting the couch to 5k. I walk every day at the moment but the consultant told me to stop exercising other than walking until I have all the results, which is frustrating as I was excercising 4 times a week - looking forward to getting back to normal with that. Did you have a general anaesthetic for the procedure, or sedation?

[RumblingChest in reply to Magnus21]

My procedure was under general anaesthetic. I know these procedures can be done under sedation, I don’t know why mine wasn’t. I am guessing that they expected the procedure to take longer in my case and perhaps that is why it was a general.

[Digger0]

I had my ASD closed via my groins last year. I felt better within 24 hrs but was told to take it easy for a week to let the wounds heal fully - less than 1cm long and no stitches. Within 4 weeks I was doing 5-6km in the Derbyshire Dales, from not being able to do 400m up a slope. By the time of my follow up appt at 8 weeks, my hearts right side had sorted it's self out. DM sent!

[Digger0 in reply to Digger0]

Here is a scan taken post op of one of my handwoven titanium devices in situ! I needed 2 as my ASD has ribbons across it.

Scan

[Magnus21 in reply to Digger0]

That’s great to hear you were back cycling those distances so quickly! Also really great to hear your hearts right size had sorted itself out so quickly, they’ve said mine is dilated/enlarged so good to hear it can return to normal!

[fishonabike]

i have no personal experience of this condition or the repair, but i suggest that you prepare you daughter for a different christmas this year - your health is really important to both of you and you must allow yourself generous recovery time so that you can move on and get back to "normal"

i don't know what plans you have and what expectations you and you daughter have for christmas but i feel you should both be preparing for a quieter time than you might initially have planned

hope for the best but prepare for the worst! i'm sure it will all go well and you will be fine, but think how much more you will both enjoy the season if you feel you have contingency plans!

[Digger0]

I was 72 when i had my ASD closed via my groins. This was in 2022. Before the op I had to stop on the way back from the village shop (400m and a slight hill) 3 weeks post op I was doing 5 + km in the Derbyshire Dales. I felt better the next day, slightly sore in my groin but nothing to complain about.