Cardiac Sarcoidosis | Keeping up with Kate

Happy Thanksgiving – Extra Grateful This Year

Posted on November 27 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 2 – The Diagnosis

Posted on July 19 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!

Part 1: Why Advocating for Your Health Matters: A Personal Experience

Posted on July 19 by keepingupwithkate91

I traveled to Raleigh, NC at the end of April to see my niece’s final dance recital at UNC Chapel Hill. The Star Heels performance on Saturday was fantastic. I so enjoyed watching this amazing young woman (who was graduating in 2 weeks) with her final performance – I’ve been watching her dance since she was a little girl. You can see the love and passion for dancing in every performance! That weekend – I also had a chance to re-connect with life long wonderful friends – my best friend from High School and one of my best friend’s from my time in TX (she is like a sister to me!). It was a fantastic weekend!

Sunday driving to the airport, I had a strange maybe 2 second strange feeling (no other way to describe it). I returned the rental car and the feeling happened 2 more times on the rental car bus. I arrived at the airport decided to sit down for a few minutes and the sensations continued. What did I do? I googled my symptoms! I had a seizure 3 years ago (one and only time) and thought the symptoms were a pre-cursor to one. It was NOT a Seizure!

There were a two decisions I made that day that I’m so grateful I made – I listened to my body as I knew something wasn’t right – I never went through security and flagged down a police officer to tell him I needed help! It probably saved my life! EMT’s arrived – my blood pressure was normal, pulse ox was normal, and my glucose was normal. What wasn’t normal? My heart rate! It was Elite Athlete Low – I have always considered myself an athlete (even when I haven’t exercised regularly) – but when I was playing competitive sports – I was never Elite!

I was alert the entire time (never fainted) and I was able to call my brother (who was at the airport with his family) who joined me with the EMTs. I was able to ask questions and advocate for myself and my brother advocated for anything I missed. One of the most important things I’ve learned over the last 3 years with healthcare – advocate, advocate, and advocate! Based on my heart rate – I need to be transported to an ER – I had two choices – a Regional Hospital or Duke University Hospital – I clearly chose Duke!!!

Why did I share the above? I believe I’m part of a generation who doesn’t want to waste a doctor’s time or go to the ER and it’s a False Alarm. This is a real thing – “In a 2018 British study, one in five people avoided going to the doctor because they didn’t want to ‘make a fuss’ or ‘waste time’ with something minor. This was even higher in women and middle-aged adults (source Cancer Research UK). Psychological barriers – like self-doubt and guilt (‘What if it’s nothing?’ or ‘I’m just overreacting’) contribute to delay – especially when symptoms are vague, like fatigue or dizziness. PS – I had fatigue, head rushes, and shortness of breath (I blamed it on the heat) the prior week at different times.

Delaying care due to fear of overreacting can mean missing early warning signs. Doctor’s would rather check out a false alarm vs. miss something serious.

Bottom Line – You know your body better than anyone else, listen to it, and I’m so grateful I did!