Michelle Hampton’s journey through open heart surgery - Part 1

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Discovering my broken heart

I’m a 37-year-old female living a healthy and active life in Sydney Australia.  In December 2016, I found out I had a broken heart.  Not the metaphorical kind you might be thinking…the real kind.

Finding out you need lifesaving surgery in your 30s can only be described as utterly terrifying at first.  There’s no way around it, no real way to prepare for the news, and that stunning realisation you have no control over what happens can really test your mental resilience. 

I was told I had a hole the size of a ten-cent piece between the two chambers of my heart and some apparently super important veins that were literally on the wrong side.  I’ve had it since birth and the congenital defect is called a Sinus Venosus Atrial Septal Defect (SV ASD) with partial anomalous pulmonary venous drainage (PAPVD).  It took me a few weeks to even get the terminology right!

After having further tests done to confirm the condition of my heart, it was explained to me that the right side of my heart was getting almost three times the volume of blood it needed and given the hole was between the two chambers, the ‘blue’ and ‘red’ blood were mixing, meaning my heart had to work extra hard all the time to make sure I was getting enough oxygen.  I still can’t believe it was functioning like this for 37 years.  My MRI scan showed my right ventricle was severely dilated - 2.7 times the size they should be.  Because my heart was so large, it would unlikely return entirely back to its normal size after intervention.  I was also told my lungs were full of blood.

The scary thing was my symptoms were minor and common, I just thought I was feeling stressed and rundown from operating a busy marketing agency in Sydney.  In a way, heart disease can be a bit invisible – it certainly was for me as I was virtually symptom-free for 37 years.  It’s astonishing that it kills three times as many women as breast cancer, yet it remains undetected for so many.

Nevertheless, the symptoms I did have were mild breathlessness, dizziness and a few heart palpitations.  That all changed of course, when I was admitted to hospital in December last year (2016) after having severe palpitations.  At that point, I knew something was wrong and it wasn’t long before I was given my diagnosis.

My specialists explained the only way to fix the defect was surgically and that I must have open heart surgery.  Open.  Heart.  Surgery.  There was no real choice in the matter either after they explained I’d suffer from heart failure by the age of 45 and irreversible damage within a few months if I did nothing about it.

During the surgery, they would need to stop my heart in order to operate on it too.  This was one of the hardest things to get my head around.  To specialists, this is an entirely normal notion.  To me, it turned my world upside down.  I mean, what rational person wouldn't be utterly terrified at the thought of having your heart stopped to have lifesaving surgery?!

Although I feel differently about it now, the day I found out about my congenital heart defect was the worst day of my life.  I was monumentally underprepared for the news, although I’m not sure you could ever be prepared for news like that.  I thought congenital heart disease was something only detected as a child and fixed as a child.  I had no idea it could be something that can remain relatively undetected until your 30s, 40s, 50s, 60s, even older.

One of the hardest things about facing a big challenge like this was having the mental resilience to pick yourself up and start planning for the surgery…and there is a lot of planning you need to do in the lead up. 

It also felt like I went through several stages of grief: 

Denial.  At first, I thought maybe they mixed up my MRI and ECG results with someone else.

Anger.  I became frustrated that we hadn’t detected it earlier and that I have a disease that wasn’t my doing. 

Bargaining.  I started negotiating my way into getting my surgery done as early as possible (this one actually worked!).

Depression.  Feeling pretty down especially about the long recovery time of 6 months.  And finally,

Acceptance. Once I’d learned how to be calm, prepared and surrender to the situation.

There will be times when it’s all just too overwhelming.  Too scary.  Too much.  But trying to approach the situation with an attitude of preparedness and surrender can make the difference between staying in a state of terror or seeing it as something that can change your life for the better. 

Having a calm and relaxed disposition not only helps you cope with the enormity of what you’re about to go through, it can assist in recovering quicker and importantly, it can make you a more pleasant person to be around when your carers are only trying to help!

Nevertheless, there will be road bumps, setbacks, scary moments, and frustrations…but these will be balanced out by moments of progress, positivity, hope and relief once the surgery is over.  Little by little, you will start to improve and see there is a positive end to your long recovery.

I hope by sharing my story about open heart surgery, I can offer a support guide for anyone else facing something similar.

Read Part 2 of Michelle's story: Preparing for open heart surgery