Hi

[Rochelle1991]

Hi, I wanted to introduce myself I’m Rochelle, I’ll be 27 next month. I live in London and I’ve had a congenital heart condition since birth, It would be nice to meet some new people.

[Hidden]

Hi Rochelle,

How are you x

[BigT2013]

Hi I only found out last year I have had hole in my heart since birth.

I have recently had open heart surgery

To repair a severely leaking Mitral valve and to repair the hole!!

👋 Hello

[DebbiB28 in reply to BigT2013]

Evening

I wonder if you would mind sharing your experience of hole in heart and surgery - I'm in a very similar position and am awaiting date for surgery. How did you find the whole process and recovery etc?

[BigT2013 in reply to DebbiB28]

Hi DebbiB28 bit of a long one.

Do u just have hole in heart or other issues?

As I mentioned the hole in my heart was found during testing last year .

But apparently I had this since birth.

I had no symptoms however at all.

My Mitral valve leak was originally found in 2012 by accident!! 😮

I again had NO symptoms.

Just attending check ups every 12-18 months with echocardiogram etc.

This was up until last year 2017.

I had my usual check up with no issues. But two weeks later was told I must have a T. O. E Procedure.

Transoesphageal. Echocardiogram.

Echo taken by inserting tube down throat.

They get 3D and better images of heart and valves.

I got called back in two weeks later to hospital to be told it was not just a leak but a very severe leak and severe regurgitation!!! (blood leaking back through valve and travelling the wrong way on every beat!!! 😮)

That was August last year 2017.

The doctors could not believe or understand how I was still moving/standing and not really ill.

I was fit and reasonably healthy walking 8-12 miles a day!

Due to this I was asked to volunteer to take part in a research project at Queen Elizabeth Hospital Birmingham

They Bombarded me with loads of tests think nearly every test going 😂

Echo

Stress echo

MRI

Stress MRI

Contrast MRI

New type of MRI (possibly first one of its kind in UK) 4 hrs long

Blood tests

High frequency ECG

Standard ECG

They also wanted samples of my heart tissue at the point of surgery 😷!

Plus lots of questions.

After all this was completed I saw my surgeon on 20th Dec 2017.

Followed by a couple more days I had to have few more tests between Christmas and New Year to get up to date results.

Getting late now plus message getting long lol 😂 I will message again tomorrow with the story of my surgery process and thoughts if you like.

How much detail do you want to know? 🤔

BigT

[DebbiB28 in reply to BigT2013]

Thank you! Even though it's long for you it's so nice to hear someone else's experience. I have had several referrals to cardiology with spells of horrible palpitations - fast beats, slow beats, you name it. Each time was told they can see the arrhythmia but they weren't overly concerned. Meanwhile I'm going mad with worry as felt awful. Anyway in 2017 saw a new doctor who sent me for CT scan with dye and lo and behold they found a hole in the heart. I too have had various tests (but not as many as you) and MRI showed abnormality with pulmonary vein also. Have two more tests on 3rd July then will see consultant to decide on surgery plan. They have indicated open heart so am also interested in your surgery journey if you're willing to share! It's certainly a roller coaster, particularly emotionally! Thanks again.

[laura_dropstitch Heart Star]

Hi Rochelle and welcome to the forum!

[Alice_Ro]

Hi Rochelle

Welcome

I'm Alice, 29 and live in London like you. I am new to heart problems, but have dived into the deep end with 2 cardiac arrests in the last 3 months.

Whereabouts in London do you live?

Alice x