When they told me the clinical diagnosis was Cardiac Sarcoidosis – I had no idea what it was and of course had to google it! (and I kept mis-pronouncing it – LOL). Searching on the internet can be great but as you know take you down a dangerous rabbit hole (and trust me – I did go there)!

Here is what I found initially:

• Sarcoidosis attacks the lungs (primarily), eyes, skin, and heart (and can attack other organs too)
• About 50% for cardiac sarcoid diagnosis are from people with Japanese descent.
• Did you know Bernie Mac had Pulmonary Sarcoidosis – The Bernie Mac Foundation supports Sarcoidosis patients?
• It is considered an autoimmune disease – and ideally having a care team that covers many disciplines is super important.
• It is considered a ‘snowflake’ disease – it means it represents differently in each individual. And it is hard to diagnosis – many go years without a diagnosis (I’m keeping my fingers crossed we caught mine early)!

A Simplified Explanation

As I mentioned above, Sarcoidosis is an autoimmune condition (and I wasn’t one of the Gen Xer’s who ate a lot of Flintsone vitamins!) that causes your body to form inflammatory cells called granulomas. They can show up anywhere – primarily lungs, eyes, skin, and heart – even lymph nodes and other organs. When it is in the heart – it is called Cardiac Sarcoidosis!

My immune system has gone a bit rogue and allowed the granulomas to grow on my heart walls where the electrical system operates. Remember in health class when you studied the heart – you have the Atrium (2 top chambers of the heart) and the Ventricles (the 2 bottom chambers of the heart)? The walls separating the chambers is where the electrical system of your heart functions telling you heart to pump and send blood to your brain and other organs. The granulomas are on my heart walls and a tiny bit in the lower right ventricle (and if you are going to have in your ventricle – mine is in the better option!) which resulted in Heart Block (or conduction block – which means the electrical signals are slow or stop – mine were slow – heart rate at times as low as 40 beats per minute and even lower – mine NEVER stopped!). Cardiac Sarcoidosis can cause Irregular Heart Rhythms (arrhythmias), Heart failure symptoms (fatigue, shortness of breath, and swelling – the week before I had fatigue and shortness of breath – but not at the same time – and I chalked it up to online meeting fatigue and my asthma while walking), and lastly Sudden Cardiac Arrest (really glad I didn’t know this until later in my research – https://www.heart.org/en/health-topics/cardiac-arrest)!

Here is the tricky part – it doesn’t always announce itself with extreme symptoms – see the ones I had a few days before – just not feeling right, shortness of breath, and fatigue – which I kind of brushed off. I may have even had a head rush or two – all on different days. I felt fine the day I left to travel to North Carolina – I chalked a lot of it up to the heat we were experiencing in NJ.

Why It’s Often Misunderstood or Missed?

Cardiac Sarcoidosis is also called a ‘zebra diagnosis‘ – it’s rare and often hides behind more common explanations. Symptoms can mimic anxiety, chronic fatigue, or general heart issues. Standard tests don’t catch it and specific imaging (PETScan or Cardiac MRI), biopsies (and in the heart no guarantee biopsies confirm as no control on securing the inflamed granuloma), and a team who knows what to look for to diagnose. Again, so happy I ended up at DUKE – right place – right time for sure! Mine was and still is a clinical diagnosis – the biopsy I had didn’t confirm granulomas (which is random based on samples from the heart – not as targeted as other biopsies). Down the road, I’ll have a PETScan to see how everything is progressing (I’m on steroids right now so need to taper to a lower level for a PETScan to show up correctly).

Why I’m Sharing?

As I mentioned before, I’m sharing my journey as I want others to feel empowered to ask questions, push for testing, and listen to that voice in your head – “this isn’t normal for me.” I’m super lucky that DUKE pushed even more than I did to get an answer! Keep showing up and speaking up! Thank you for reading and walking with me on this journey!

“Love yourself first, and everything else falls into line.” – Lucille Ball