Hi all
After many tests & procedures I have a date for my ASD device closure on Friday 22nd March, so happy to have a date booked in to get everything sorted! It will be at the Brompton in London with Dr Heng. If anyone has any pre-op or post-op advice I would much appreciate it!
Emma x
Which procedure are you having?The simplest is the procedure through the groin.Your recovery....speed of recovery. will depend upon if you have the simple catheter or open heart surgery .Mine was the simple version and I was out of hospital the same day and recovery was more or less immediate.But a lot will depend on the size of the hole and to some extent the condition of your heart .
Thanks for your message, I’m having it closed via the groin/catheter method. How long did were you needing to rest at home for and when were you allowed to drive? I live alone (just with my daughter who’s 10) and just trying to work out if I’ll need to have a friend or family around past a few days? Thanks for any advice. Emma
hi Emma - I could have written this! Had my procedure with Dr Heng at the Brompton last October! All went well and I’m now feeling a lot better!
Pre op I would say the waiting is the worst - I was very anxious for the procedure! I needn’t have been - the team were brilliant and I felt very looked after!
Recovery was a bit trickier for me than I expected and it took about 3 months to feel better - I got a lot of headaches and brain fog. I don’t think that’s very common tho so my main advice is to just look after yourself afterwards and recognise you’ve had a significant procedure!!
Overall I’m so pleased I had it done and the care was brilliant - Dr Heng is lovely! Very happy to answer any questions you have!!!
Good luck!
Thanks for the reply, I agree, Dr Heng is really lovely! I felt much better about it having met her. I agree, it’s the waiting and all the tests that causes anxiety, I just want to get fixed now! Sorry it’s taken you a few months to feel better - what were you able to do in that time? Were you able to work and go about normal life or did it have more of an effect on your day to day life? Thanks again for your advice, Emma
Hi Emma
So immediately after the procedure I took a week off work - mobility was a little impaired by the tiny (and I cannot stress how tiny it is!) wound which was annoying and I thought I needed to get over the anaesthetic. After that week I realised I felt really spaced out, had brain fog and lots of headaches. I was able to work and go about life but just felt a lot slower than usual which was tough! It did gradually improve and 3 months later I feel great! I suspect (but I’m no medic!) it’s linked to the tissue growing over the device which apparently happens in about 3 months.
I did have lots of checks after the procedure to make sure all was well given how I was feeling which was reassuring and amazingly my enlarged right hand side of my heart went back to normal size in about 2 months!
So all in all a success and I feel so much better knowing the hole is fixed!! I’m sure you will too!!
I was up and about with energy the next day after a 10 hour sleep overnight and loads of rest in the hospital on the day of the op.I went home at 10 pm .I went for a walk the next day Felt fine but we are all different. I would not expect you have to rest much afterward .My procedure went very well,no hitches. i was 72. You have youth on your side.I had morphine and sedation during the procedure so no pain....and a nurse and doc. to hold my hand at times.I didnot need any further rest. Just got on with life.I had felt tired for months and suddenly felt very well and energetic after the op.I hope it will be the same for you. Mine was done at the J.Radcliffe in Oxford.Oliver Ormerod did it. lovely man who sadly died quite suddenly last year.He thought i had had the hole all my life but i had been fit as a a fiddle until i developed an embolism in atrial hole and it sparked a TIA.
Hi Emma, another Emma here. I am 34 and am awaiting the outcome from a recent TOE procedure to determine which procedure I will require. It would be great to connect with you to see how you get on with the procedure and recovery. Wishing you all the best.
Yes of course, message me anytime. 2 weeks and 2 days until my surgery - just found out I will be going in at 9am so hopefully get it done sooner in the day! Any questions just let me know. When do you get the results from the TOE? Best wishes, Emma
Good luck for tomorrow 🍀
Thanks so much! In at 9am but they’ve said they think I’ll be going down at 2pm. Feeling nervous now but looking forward to getting it sorted!
oh I can imagine. Plus a long time for you to wait until 2pm. It will be interesting to see how you feel afterwards. That’s what I am thinking about it. Will my breathlessness disappear? Take care and let us know how you get on x
hi Emma I am interested to hear how you get on also. I am currently waiting for a date to have the catheter closure. I will be having mine done at the Freeman in Newcastle. 😊
I’m ok, but sadly it didn’t - they made a number of attempts but due to the position of the ASD which is sitting in the middle of aneurysmal tissue they couldn’t close it. I was so upset, I never thought this was a possibility! Anyway, they have done the right thing, this is the first time my surgeon hasn’t closed an ASD she said. So now waiting for an mri and then they will meet to discuss my options. Apparently they can try a different angle through my neck or puncture another hole in the heart.
From a positive point of view I have and had no pain whatsoever in the groin, the incision is so so tiny you wouldn’t even know I have had anything done, and I feel completely fine in self. Been out walking the dog last 2 days and no problems from that aspect.
Please don’t worry about yours as my story is definitely an anomaly!
Emma x
Hi Emma oh I am so sorry to hear that. You must have been devastated. Awful to wake up and find out they couldn’t do it. Let’s hope they can figure something out so you don’t need to have open heart surgery.
Sounds like you recovered quickly as far as the incision goes which is positive. I still haven’t heard anything regarding a date for mine. Let me know how you get on. Take care.
Jill x
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