Turning 50 with a broken (bicuspid) heart

It’s one year today since my broken heart was fixed.

We all know turning 50 is a milestone - one some people relish, and one others try to repel.

Me I kind of relished it. I really didn’t mind being 50. In fact, in some ways, it was the excuse I wanted for ageing, allowing me to have grey hair (even though I still dye it), wrinkles and the odd aches and pains.

For me, it was more of an opening of a new chapter in my life. Turning 50 happened during lockdown (or one of the versions) so instead of the traditional big party, it was a series of intimate lunches, many of them outdoors, with close friends and family, all with prosecco. I share my birthday with my eldest child, so the focus wasn’t even really on me but on a beautiful boy turning 14 (now 16).

So 2021 and turning 50 was shaping up to be about new beginnings

  • v  a new sense of place - lockdown had to finish sometime and we could get back outside and into the open to enjoy our freedom
  • v  new relationships - I'd recently separated after a 25-year relationship and was in the early stages of a new friendship
  • v  new found confidence - being 50 gave me a sense of authority I’d never felt when younger

and then things changed…

The diagnosis

A routine check-up uncovered a sudden spike in blood pressure with no obvious cause.

Blood pressure is the pressure of blood pushing against the walls of your arteries. Arteries carry blood from your heart to other parts of your body. Your blood pressure normally rises and falls throughout the day. (CDC.UK)

As a general guide: (NHS.UK)

  •  ideal blood pressure is considered to be between 90/60mmHg and 120/80mmHg
  •  high blood pressure is considered to be 140/90mmHg or higher
  •  low blood pressure is considered to be below 90/60mmHg

I say a spike for anyone with knowledge about blood pressure mine read 228/80 – the staff at my GP surgery still talk about it. This led to a few months of investigations. To cope with trips to ‘special investigations’ and having what seemed every fluid in your body tested, plus multiple blood tests at specific times of day and after specific medication, I imagined myself as a superhero – not sure what my superpower would be but maybe one day I’ll find out.

However, these uncovered an adrenal adenoma – a benign tumour on my adrenal gland (who knew that even existed and phew nothing to worry about), confirmation of perimenopause (no surprise there) and then news that I'd been living with a heart defect for 50 years (it would actually turn out that I had two heart defects). That was the shocker. Yes, since my birth I’d had a heart defect without knowing it, but it was only now starting to affect my body.

Adrenal glands, also known as suprarenal glands, are small, triangular-shaped glands located on top of both kidneys. Adrenal glands produce hormones that help regulate your metabolism, immune system, blood pressure, response to stress and other essential functions. (John Hopkins)

An adrenal adenoma is a benign (noncancerous) tumour that forms in your adrenal glands. It's the most common type of adrenal gland tumour. Most adrenal adenomas don't produce symptoms or require treatment. (Cleveland Clinic)

I found out whilst sitting on a bus travelling home immediately after an echocardiogram.

An echocardiogram or "echo", is a scan used to look at the heart and nearby blood vessels. It's a type of ultrasound scan, which means a small probe is used to send out high-frequency sound waves that create echoes when they bounce off different parts of the body. (NHS.UK)

The very nice consultant waited to speak until I’d alighted the bus, then started to explain what was wrong with my heart. She wanted me to hear the diagnosis before receiving a random hospital appointment to see a cardio specialist. She wasn’t a heart specialist, indeed wasn’t even my consultant anymore as my benign tumour needed no further treatment but she had been copied in and as the intended consultant was on long-term sick, she contacted me directly. Now that’s great customer service.

It was much appreciated but I didn’t really take much in apart from the words Bicuspid Aorta Valve. I’d never heard the phrase before, but I knew it was something I could google so those were the words I made sure I remembered.

What is a Bicuspid Aorta Valve?

A problem present from birth in which the aortic valve only has 2 flaps instead of the usual 3, which can cause problems as you get older. (NHS.UK)

A Bicuspid Aorta Valve is a congenital heart defect. This means it is present at birth. Rather than what it should be … a tricuspid valve (three parts), mine only has two parts (in medical terms leaflets) so fails to look like a Mercedes badge. These leaflets open and close to let the blood through. Over time the defective valve wears out quicker, narrows and fails to close properly. At this point, it is then generally picked up by the medical profession.

The internet tells me that between 0.5% and 1% of the population have it – most unknowingly. It’s also not unheard of for a valve to have only one part or even four but that’s much rarer. There is no cure but there is the option of a repair or replacement through surgery. So I’m currently getting my head around the fact that at some point I’ll probably need heart surgery.

My Bicuspid Aorta Valve

I don’t know how many times I’ve googled Bicuspid Aorta Valve, but it’s a lot. The internet is your friend (and foe) when you get a medical diagnosis. My former consultant had rightly assumed I’d googled everything there was to know about my adrenal tumour in our conversations. Now I don’t think there is a page on the internet referencing BAV that I haven’t read, and many times over. Even those in medical journals aimed at people with far more detailed knowledge of the condition. But I believe in information being power and informed decision making. Unsurprisingly there are multiple Facebook Groups too where people with BAV connect – around the world. However my first consultation with a cardiologist in April 2022, when I found out more and got to ask an expert some questions.

After a few more tests the MRI and transoesophageal echocardiogram (I’ll write more about these later) the decision for surgery was made.

I met and selected (more of that later) my surgeon and the type of operation in May, had my pre-op assessment in June and finally surgery after 5 cancellations (thankfully I only knew about 2 of them) on 15 September 2022. 

One year ago.

Deb x