Scheduled for OHS for ASD closure

[Mills27]

Hi everyone,

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 😊

[DWizza]

Hi Mills, I had quadruple bypass surgery following Nstemi heart attack in July , pricedure took place in the 25th July. Physically, I have made a great recovery . Was back riding my motorbike and driving in 2 months and physical work around our small holding. I was able to lift things close to my body , I started to to progressively increase my physical activity. I was poo picking in the paddocks and gradually started to manoeuvre a wheel barrow, lifting the poop scoop up and into the barrow. It helped with my mobility in my upper body. Obviously I only did conservative amount of work when I felt able to , there was no way I wanted to regress or damage my sternly. I also had scars on both legs and left arms where arteries where harvested .

Nerve endings were a bit stingy for a few months . I also joined a level NHS 6 week rehab course . It was way below my expectations and far too easy , but I went religiously and made sure I worked to my capacity , it was meant to be tailored to the Individual. Walking at home was the base of my own rehab , as advised by my medical team physios before discharge. I started with a walk round the country lanes by my farm. Then added 500 metre or 3 mins. I was soon walking 5k , then added some some increased efforts in. I also returned to a yoga class after 4 months and was back to lifting weights and running (jogging 🤦🏼) under supervision of an online cardiac coach, achieved my 5k goal 3 times , now hitting 6k with a goal of 10k.

I found the medication caused me to feel like a zombie at various parts of the day , I had my bisoprolol reduced and felt a lot better.

I dint think you’ll have issues after 6 months for going in water .

I’ve had no inclination to fly so haven’t researched that element.

Wishing you a fab outcome and a comfortable speedy recovery, don’t hesitate to keep asking . 👍🏻

[MiriaMinson]

Hi Mills, I hope your surgery went! I would love to know about your experience? I am waiting to find out whether I’ll have OHS or catheter based repair for my 2cm ASD and quite nervous. Hope you’re recovering ok x

[Mills27 in reply to MiriaMinson]

Hi Miria!

Thank you for you message 😊

My OHS went extremely well and I was out of the hospital within 5 days. Two months afterwords, I am now considered recovered (I am actually returning to work tomorrow 🤞) and I didn’t have any major problem/complication from it. The scar is a bit higher than I thought but it is now starting to fade little by little. I do not regret having OHS. Now my heart is finally whole ♥️

Please feel free to ask if you have any question and good luck with your procedure!

[MiriaMinson in reply to Mills27]

Thanks for your reply! I’m so happy to hear your procedure went well and you’ve recovered! That’s great news and very reassuring. I had a recent cardiac MRI and now waiting a transesophageal echo in a couple weeks; so hopefully I will know after that. The waiting times have not been great! I was diagnosised September last year after a the usual echo. I didn’t see a cardiologist until January! Then was told I will be treated within the year. Can I ask if you had dilated right ventricle from your ASD?

[Mills27 in reply to MiriaMinson]

Hopefully you’ll get your TOE soon and they will make a plan afterwards! I know waiting time can be very frustrating unfortunately. Yes, my right ventricle was severely dilated, some of my valves were leaking and my pulmonary pressure was borderline. Most of these problems have resolved soon after surgery!

[MiriaMinson in reply to Mills27]

That is really great to hear and I'm happy the problems have resolved since surgery! I had my TOE about 6 weeks ago and I am seeing a cardiologist at a different hospital (st thomas) I'm guessing they will tell me if I'll have OHS or catheter closure, I still don't know! I'm wondering if it's normal for all of this to take so long now. I hope you are well and are in good health

[AH31]

Hi

I had open heart surgery six weeks ago, for a valve replacement. My heart condition is congenital (since birth)

I am recovering really well and have been told to have twelve weeks off work, which I am half way through now. My scar is very neat, I have had three open heart surgeries and you wouldn’t know by looking at my newest scar.

I hope everything is going well for you 😊