My cardiac sarcoidosis diagnosis was a result of the team at Duke digging into to find out why I was having bradycardia – heart rate per minute of less than 60 – remember mine was at 40 (and I wonder if it went lower??)

I have a new appliance and it isn’t in my house! In order to make sure my heart rate sits in the normal range – I’m now the proud owner of a pacemaker / defibrillator (aka ICD)! I still remember the nurse in the ER saying I would most likely get a pacemaker – I really didn’t believe her as it was a bit of off the cuff remark (or that is how it appeared to me).

A little background – based on my short amount of research – most who are diagnosed with Cardiac Sarcoidosis – have a very high heart rate and the defibrillator will shock to get you back to a lower rate. On May 1st, Duke wanted to implant a Bi-ventricular ICD (3 wires – which means one wire in each ventricle and 1 in the atrium – unfortunately one of the wires – just wouldn’t work with my body – so I have a 2 wire pacemaker / defibrillator.

The ICD implant procedure was about 2 hours – I was completely under. I was groggy during recovery (I had a heart biopsy in the AM – where they gave me a relaxing sedative – I was awake for that). I had to go on oxygen for a bit until I was getting enough into my lungs – I was tired and it felt like I had a 10 lb. weight on my left shoulder (that was the compound bandage) (and I found out the next day – they used to put a weight on the shoulder around 8 – 10 lbs). I was finally able to eat dinner and enjoy my melted but still yummy vanilla milkshake from Chick-Fil-A (thanks Jill!).

The first 12 hours or so (my recollection) are the most important for the placement of the ICD. They had me up super early for an x-ray (all was good). Then I had a technician set and test my ICD – I felt the pacing a little bit during the test. I’m set to pace at 60 and I think max at 240 (again that is memory – not confirmed – I need to ask the next time I go see my EP Cardiologist). I had doctor’s visits from my care team – Cardiology and Rheumatology. I can’t say enough how wonderful the my CARE team was at Duke!!!

I was lucky to have part of my CARE team either from the Philadelphia area or they went to school in Philadelphia (or both). They helped me get appointments at Jefferson University Hospital so my follow-ups were set before I left Duke on May 2nd (yes I was discharged the next day).

The ICD addresses the electrical part of my heart’s function. I have a monitor at home that is enabled with a cellular connection (I work for a large MVNO so I of course looked to see if the connectivity was provided by my company – it wasn’t – it is connected via Vodaphone). The device checks in overnight about once a week to provide reporting. Plus I can manually send a transmission – which I’ve done twice (all was good both times). I don’t have to take the transmitter with me when I travel – the data is stored. Only time I would need to have it with me is if I was going to be away for a month or more.

To address the inflammation caused by the Sarcoidosis – I was put on prednisone. I’ve had lots of tests and one of the things we found is that my ICD (the pacemaker portion was set to be overly sensitive – so that has been adjusted). As a result of the adjustment – we discovered that I’ve been pacing less and less – what does that mean? It means that the pacemaker hasn’t really had to intervene with my heart’s electrical system – which to me says the inflammation is going down! YEAH!! I’m currently tapering my prednisone and on Cellcept – a corticosteroid-sparing therapy (Cellcept is also used for transplant patients). I’m doing well managing the side effects of both medications. I’m tracking my BP and Glucose daily as both can be raised while on both medications. Both are within normal ranges – so very happy!!! Since I’ve been on prednisone since May – I’m on an osteoporosis prevention medication 1x per week (I will stop that once I’m off prednisone). And I’m taking 2 supplements – Calcium and Omega 3 with Vitamin D & K – all reviewed and approved with my care team (really important to share supplements). All that being said – I will be reviewing medications and interactions with my Pharmacist – always good to double and triple check and ask questions! Remember – be your own BEST ADVOCATE!!!

PS – For those reading who are newly diagnosed with Sarcoidosis – based on all of my research (since May 2025) – the medication treatment can be different as it is a bit of seeing what works and what doesn’t work to get the inflammation down.