I am a 30 yrs old female, diagnosed with large Atrial Septum Defect (ASD).
After failing device closure in September in a London Trust, I was told that the next step would have likely been open heart surgery (OHS) and that I would be put on the list after having some more investigation done - with a waiting time of around 8 months.
In the meanwhile, I have reached out to another consultant in a hospital out of London, who offered a consultation with their team to explore the possibility to close the defect with minimal invasive procedure. Unfortunately, I have not heard back from their team yet since December.
This Tuesday I have been informed that I have been schedule for OHS in 3 weeks (!!!!) in the London Hospital.
Despite being happy of having this sorted - specially because on my last echo they detected a borderline raise in pulmonary pressure - but it came as a shock and I am still trying to process it all!
Next week I have my pre-op visit in which I will make sure to ask to have a rationale for not taking a minimal invasive approach to the defect. I have also planned some annual leave after my pre-op visit before the surgery to visit my friends and family, as I assume I would not be able to fly for many months.
I guess I am a bit worried about the procedure and the post op, specially about the possibility that something could go wrong but also about more "silly" things such as the scar and the fact that I would not be able to travel home for a long time .
I am sure that on my pre-op visits I will be asking a million questions to the nurses and doctors, but it will be helpful having also your point of view as patients.
If you had a similar experience, is the recovery so bad and long as I am picturing it?
How long have you had been off work? - I work in healthcare and despite the fact that I am not constantly exposed to patients and physical work - I feel a bit scared to return to work for the infection risk.
Have you been following a specific care for your scar? Would you advise any specific product or care?
How long after surgery you have been told that you could fly for a short distance (ex 2-3 hrs flight)?
And finally, is there any contraindications to chlorinated water (pool water) and Spa within 6 months from the surgery?
Thank you to everyone 😊
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Mills27
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I had a medium sized hole closed about 12 years ago when I was in my early 70's.I had a procedure through groin so not open heart surgery. I think the location of the hole is also quite important as to how they plan to operate.I also had a pre op procedure to view the back of the heart .....camera down throat,uncomfortable but quite quick and not painful.The procedure to close the hole was painless.They gave me morphine all the way through ...it took about one hour or perhaps less during which time I was 'comforted' by a nurse at my side .Then several hours on my back. Afew hours later I went home in a taxi and felt fine the next day.I got up and had a quiet day .That was it.
Thank you for your reply. I am glad you had a good experience related to ASD repair. Unfortunately my defect is too irregular to be closed in the same way you had. I underwent the same test you had, and they even tried to close it passing through the groin as well, but they were not successful.
Hi Mills27, I had a new valve 5 years ago, aged 49, via OHS and was surprised how quickly I was up and about. Once out of hospital, a week later, the first few weeks were slow and hard going but after that it's a case of taking it easy, doing any rehab/exercises and don't overdo it.I am self-employed so was doing some work, from home, very quickly and was desperate to drive by week 8 when told I was OK to do so.
Worst part is looking after your chest as takes 12 weeks for bones to knit back together but still had mild discomfort for months afterwards when doing certain things.
I did nothing with the scar and it's not too bad but I do understand that a lady would have more concerns.
I was 6 months before I was back swimming but I had another issue that prevented me swimming, I think once your wound is fully heald you will be OK.
Don't know about flights but probably within 2 months unless there's a specific issue for your procedure.
hi - I had OHS in Oct 23 , I had a stroke in 21 and they thought it was due to PFO hole but on trying to close that through the groin found a large ASD - had subsequent AF and the decision was made for OHS . I was in hospital for 5 days , could have been a day less but due to constipation had to stay until able to go. The experience in hospital was fine , yes it’s very daunting but the care is amazing. Use the pain relief and listen to the staff - I needed something to help me sleep which really helped. Coming home felt tough as you feel a bit on your own but you are encouraged to be up and about very quickly - find things to occupy your mind as I found you have a lot of time to think. I work in healthcare too just need to speak to them and your consultant about getting back to work. I hope you are ok and just get through this bit and can move on. Take care
hi - still waiting but that’s because of occy health having no availability- I felt ready in December, the thing is not to rush though it’s not just not being in pain it’s also feeling ok mentally and that’s what I’ve found hardest. Do what you’re doing (ie) talking to people-it helps so much . Take care
Hi I had my surgery in July 2020.I was out of bed sitting on the chair when still in ICU I needed a lot of help but I made it, when I went back to the ward the physio came every day we started with just a walk round the bed and moved on gradually to walking up stairs, I had a walker for a few days, 2 sticks and then just one, I could shower by myself and wash my hair after a week it was amazing. They kept on top of pain relief constantly which definitely worked I definitely don't remember it being a problem at all, unlike the food 🤣. My scar was sealed with purple glue which gradually came off in the shower, I just put moisturising cream on it, some people use bio oil. I don't even think about my scar anymore it is still noticeable at the top probably because I am so thin. The first time we went to Spain after surgery I was a bit self conscious but I still had my bikini on and now I forget it's there. I never drove for 10 weeks because I was frightened in case I had to do an emergency stop and my wound would open. I never flew but I am sure your nurse will let you know if ok, it was probably a year before I went swimming pool/sea but that was because of the virus 🙄
Wishing you all the best for your surgery, take care Char
Hey Mills, let's talk! I had OHS in London in June to close a large ASD that was undetected until Dec 22. I was 38. DM me, I'm happy to have a chat, it's easier than writing a massive answer on here! And I also have a blog that I updated throughout the diagnosis, surgery and recovery - ongoing. Link in my bio. Sorry for brevity, I'm outside today and too cold to type long 😁 in summary, don't fret, you'll be fine, and I'm here to answer anything that would help you. Zoë xx
I Asd closed 10 years ago and i have never looked back Definatly gave me a new lease of life ,i was 58 at the time and only thing that happened with me was i was left with AF which i take medication for but this can happen with any heart op , but does not happen to every one but mine is well under control with the medication
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