health

Happy Thanksgiving – Extra Grateful This Year

Posted on by keepingupwithkate91

Happy Thanksgiving from my family to your family! I’m up early this AM enjoying my coffee waiting for my Cardinal friends to show up and say Good Morning!

I started my Cardiac Sarcoidosis journey while in North Carolina at the end of April this year. Before leaving Duke University Hospital in NC, I left with a shiny, new ICD! I’ve been to countless doctors appointments and a few tests at Jefferson University Hospital in Philadelphia since June and I feel like I’m my own personal Pharmacy (lol)!

At my most recent doctor’s appointment they shared that my ICD has 13 years left on it. Why is that important? Most have a 10 year lifespan. With mine having 13 years – I’m not using my ICD much – it was primarily implanted for pacing purposes – but there is a risk with Cardiac Sarcoidosis that I could at some point need use of a defibrillator (haven’t needed it so far) – so I have both. Win #1!!

Last Friday, I had my first PETScan. What is a PETScan? It is a test that is used to find inflammation in the body. Used for Sardoidosis – especially when you have a ICD (no more MRIs for me). The machine reminded me of pictures I’ve seen of an open MRI. There was prep for this test – NO CARBS – NO SUGAR. My cardiologist asked me to start early if I could. I started my prep Tuesday night and ended Thursday night at 8:20 pm. I then started a 12 hour fast prior to my required time at Jefferson. My ‘diet’ for the week allowed – PLAIN protein (bacon allowed), Nuts (plain), Eggs, Water, and Black Coffee. I kept it simple – Soft boiled eggs and bacon, bacon wrapped plain chicken tenders, and eggs/chicken cooked in bacon grease (yes – you have to get your flavor somewhere!), and plain pecans/walnuts. Way easier than colonoscopy prep. This prep is important to ensure blood glucose prior to the test is under 200. Mine was at a nice 91 (I was able to have water and black coffee during the 12-hour fast). For the next hour, I sat quietly as the trace they injected into me traveled to my heart to ensure the scan was able to see what it needed to see. What was it looking for? Inflammation – specifically – granulomas – key signs of Sarcoidosis! The test is easy and non-invasive – they slide you in (take a blanket though as the room is chilly) and take the ‘pictures’. No holding your breath – I had to do that with the cardiac MRI (pre-ICD). My cardiologist prepped me that she thought I’d still have some inflammation based on how much inflammation I had back in April. She said she would call me to discuss my results (as she would also consult with my Rheumatologist on next step treatments). Jefferson uses myChart – so of course all day Friday – I’m checking the portal and nothing. I figured my Cardiologist was holding the report until she could speak with me. The report showed up in my portal Saturday evening! The report results = “No evidence of active myocardial sarcoidosis!!!” WIN #2!! I’m so pleased with the results! This doesn’t mean I’m cured / in remission – but it is the first step for remission! My Cardiologist and I haven’t been able to connect this week to officially discuss the results, medication adjustments (hoping for another taper on the prednisone), timeline for next PETScan (and remission milestones)!

I’m extra grateful this Thanksgiving for the love and support from all of you during this journey and of course – the results this week!

PS – I will be laying a bit low this winter as I’m on immunosuppressant medication (I’ve had a cold for over a week!) (and I don’t think they will change that medication) and I’ve been sick 3 times so far this fall (nothing major – just annoying!)

Part 3: What is Cardiac Sarcoidosis?

Posted on by keepingupwithkate91

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

Part 2 – The Diagnosis

Posted on by keepingupwithkate91

I arrived at Duke with a team ready and waiting to take care of me. They immediately ruled out many issues including a heart attack (lots of blood drawn). I shared all of my symptoms from the day and the prior week. We discussed prior history including my Lyme Disease Diagnosis back in 2012 (I was told it was too long ago for that diagnosis to impact what I have no – I pushed back and said – there isn’t enough research with Lyme Disease!).

It was decided to admit me to overnight into ER observation. The next morning – I was fitted for a Holter Monitor ( https://www.heart.org/en/health-topics/heart-attack/diagnosing-a-heart-attack/holter-monitor) – so my brother and I started looking at flights back to Philadelphia. We were waiting for a discharge update and the next thing we knew I was being told I was being admitted to the Cardiac Floor and having a Cardiac MRI. We asked for a doctor to come in and explain the change in direction (that never happened – in the end – there was an opening with the Cardiac MRI and they wanted to get me in there ASAP as they couldn’t understand why someone my age with no family history of heart issues at this age had such a low heart rate).

Have you ever had a Cardiac MRI? This was my first. It was 90 minutes long as the MRI was with and without contrast. I listened to George Winston – December (my go to for a MRI). The music relaxed me for the test. This was a MRI where I had to participate – I had to hold my breath for periods of time so the MRI could capture the up and down of my heart rate (when I counted to 20 I had to clench my fist – I was able to hold my breath for the time needed).

After the Cardiac MRI, the Cardiologist came in and shared that I most likely had an autoimmune disease that was attacking the heart and creating heart block (think electrical system of the heart vs. heart blockage). The diagnosis – Cardiac Sarcoidosis! Have you ever heard of it? I’ve never heard of it.

I was at the right place at the right time as Duke University Hospital has a Sarcoidosis Clinic (https://www.dukehealth.org/treatments/sarcoidosis)! I believe if I hadn’t traveled to North Carolina that weekend – I wouldn’t have the diagnosis as quickly as I did and the treatment started. My diagnosis is a clinical diagnosis from the Cardiac MRI (Duke has 3 -4 Cardiac MRI machines and UNC Chapel Hill has 1 – after that there isn’t one for over 100 miles!). I had a heart biopsy later in the week that was inconclusive (that happens as the sample can be hard to find the inflammation). I had a CT scan as well and there wasn’t any other inflammation – which is important as Sarcoidosis can attack the lungs, skin, heart, and just about any organ.

The Cardiac Nurse who was with me in the ER and then with the diagnosis on the Cardiac floor (I wish I could remember her name – she went to University of Pennsylvania for Nursing) – we had a connection – she could read my face I’m sure – she reiterated a couple of times – “Thank goodness you didn’t get on the plane to PHL” and she asked me multiple times – “Are you OK?” “How are you doing?” In full transparency – I was scared! I still am as this is an unknown journey – but I’m up for the challenge! I feel extremely lucky that I was diagnoses so quickly and feel like we caught it early!