Hole in the Heart

[Iheartlego]

I’ve been diagnosed with a hole in the heart, bicuspid valve and dilated ascending aorta which has rather come as a shock! I’m booked in for a procedure (transcatheter) to close the hole next week. I’m irrationally scared of the procedure and what this all means for me going forward. I know I will need checks going forward but I’m not really sure what those will be.

I’m 40 years old and apart from some breathlessness (which I now realise was probably linked!) have no symptoms. I just can’t really believe this is happening to me and really can’t believe this was never picked up before!

Looking for any stories like mine or anything to help calm me down before the procedure! Thank you!! 🙏

[Yumz199725]

Hi sorry about your recent diagnosis can imagine it was a shock! I have bicuspid aortic valve severe aortic regurgitation and moderate stenosis and small restrictive perimembranous ventricular septal defect defect ( essentially is a hole in the heart) but they don't want to operate as it would cause more problems then it would solve, glad your having your procedure soon and hope everything goes well! ❤️X

[Ageingfast]

I was bicuspid and have been very active for seventy years without even knowing I had two propellers rather than three.

Stenosis meant I needed open heart surgery for a new valve.

Of course I was very very wound up at the thought of the op. Irrationally frightened. But as soon as I reached the hospital the fears melted away. Cardiac staff are fabulous. The op is very safe, the surgeons are so skilled.

It’s nothing like regular hospital treatment. Light years ahead. And the follow up, for me, is now brilliant.

Rehab was long for me, like three months. But I felt a bit better every two days. Then I had my life back. I can’t comment about the hole in the heart.

You have the big advantage of being young. You will recover faster than me.

Best wishes

Sooty

[10gingercats]

I had a hole in my heart closed at age 72/3.Only had sedation and a spot of morphine en route while they worked......entry via a vein in groin. it took less than an hour .It is said to be a very safe op/procedure. In hospital one day. No other surgery at the same time.I had so much more energy after the op. than previous few years. Docs. thought I had had the hole since birth but it gave me an embolism and a tIA so doc. wanted to close it, and quickly. It had never affected my life.I had been around the world,had a baby and lived a full life without knowing I had the hole. i do have major tricuspid regurgitation and other heart issues but still here and active at 85. so look forward to a better future without the hole in your heart.

[Coper10]

I was aged 52 when out of the blue I was found to have an aortic aneurysm of 5.8cm. I had not had symptoms and it was found incidentally. Once discovered, however, I was advised I needed an urgent operation. The care and support I had from the cardiac team and in particular my surgeon were outstanding. Having had open heart surgery, a replacement aortic valve, root and ascending aorta - I am over 2 years on. I work, enjoy my family and am doing all that I want to be doing. It is a huge shock - but be reassured that once issues are known about they can hopefully be sorted and although huge to us, these operations are second nature to the teams that do them. Wishing you all the best!

[Rainfern]

Hi Iheart, I had my hole-in-heart op 55 years ago, age 15. It was open heart surgery in those days where they cut through the sternum to reach the heart and kept the blood circulating with a heart-lung machine that looked like a space age piece of catering equipment. The scar was quite a whopper too. I was pretty brave at that age, but did have my mum and dad right with me! Completely successful op, no heart problems until I developed an unrelated arrhythmia last year. When I learned that hole in heart is now patched up via catheter surgery I couldn’t help thinking how much easier the rehab and healing must be these days! Wishing you good luck. It won’t be nearly as awful as it sounds and you’ll soon be feeling way better than you are now 😊

[LadyZ13]

I had a hole in my heart diagnosed at Christmas. It was very big and I had open heart surgery in June to have it closed. I would have loved a catheter procedure but the hole was a bit awkward to close that way. I had no symptoms and it was a massive shock. When I got the diagnosis I started a blog and chronicled the entire thing which is still ongoing. The link is in my bio. You're honestly not alone with this. There is also a FB group called Adults Atrial Septal Defect ( Hole in the Heart) which is full of people who have had this sort of a diagosis out of the blue and I wish I'd found it before my surgery.

It's much more common than ever I thought and what they're going to do is a very widespread procedure. It feels very scary but you WILL be ok. x

[Iheartlego in reply to LadyZ13]

Thank you so much for your reply 🥰 - I’d actually previously stumbled on your blog - really sounds like you’ve been through it! Thanks for the FB recommendation too - definitely helps to know I’m not the only one out there! I know how lucky I am that a catheter is an option - it’s just all so scary!!!

[LadyZ13 in reply to Iheartlego]

Just because it's a less invasive op doesn't mean your fears aren't valid. Not in the slightest. It's a massively scary thing to come to, and I can see that the idea of someone fishing around in your heart with a wire is also pretty anxiety inducing. In good news, they're Very Very good at what they do and if they thought it wasn't the best solution for you they'd not be doing it. These early days and weeks of getting your head around the diagnosis and necessary treatment are very draining and tough. But it will become your new normal, I promise. Fast forward a few months and there will be days when you barely think about it.

If you'd ever like a chat just message. This heart stuff can feel a bit lonely!

[RumblingChest]

Hello Iheartleho. I can’t speak to your other diagnoses, but I found I had a hole in the heart this spring at 55, after investigation of a freak episode of atrial fibrillation. It was rather out of the blue and it does take some getting used to the idea, especially if you have few or no symptoms. The people on this forum are lovely and you’ve already had some great replies.

As for the procedure you are going in for, mine was successfully closed with the same procedure this summer. Day trip to the hospital, done under general (I suspect this was because they knew it was going to be a bit fiddly). Apart from some transient arrhythmias that seem to be reducing, everything’s been fine since.

Best wishes for your onward treatment.