Age 38 Lives in Dracut, MA (USA) First symptom: out of breath Complete heart block Lots of inflammation and 20% EF ICD with 100% pacing CRTD, Entresto, prednisone 40mg, beta blocker Shocks and prednisone side effects Remicade and complete remission, no longer pacemaker-dependent

My name is Dan and I’m a professional sculptor and restoration artist, metal head and goth, horror fanatic, men’s long hair guru, and all sorts of things. I also have cardiac sarcoidosis.

4 years ago in October of 2017, my wife and I were building brand new bunk beds for our two oldest boys. I was 34 years old and we were expecting our 4th child in two months. A happy time. A little bit crazy with 3 little kids and a baby coming. Lots to worry about but we’ve been there before. I throw a box in the recycle bin outside and when I come back in to bring up a new mattress, I can’t seem to walk up the stairs. My wife laughs and calls me lazy but my muscles are failing like I’ve done 12 reps of dumbbells at the gym. I know that burn and it’s not supposed to happen that easily. We talk about it for days. I notice palpitations but keep it to myself. My wife thinks I’m maybe anemic. Fast forward from Friday night to Monday, I go to my GP and she does an EKG. After it’s done she says I need to drive to the emergency room and she’s gonna call ahead. She wasn’t a very good doctor and I should have gone by ambulance. All I see on ekg results is myocardial infarction of intermediate age. What did I do? I was a smoker at the time and wondered if I caused heart disease or something. I cried on the way. So I get to the hospital and they tell me I’m in 3rd degree heart block. I ask if my arteries are clogged and they explain it’s an electrical block.

After a week in hospital, talks of Lyme disease from a prior tick bite 7 years before, I go home with a Holter monitor and eventually another doctor’s appt unrelated and I can’t walk to my car. I go back to Lowell general hospital in Massachusetts and they eventually send me to Tufts in Boston where I’m treated to this day. They were amazing. After a bunch of tests – mri, pet scan, echo – they talked about cardiac sarcoidosis. Uhhh… what? So I look it up and the life expectancy (from outdated websites) scares the crap out of me. I spend a month in the hospital. Tests show lots of inflammation, scarring, and a 20% ejection fraction. They schedule me for a regular pacemaker on Monday as I’m now in full heart block. My wife is visiting me, due to have our son James Tiberius in a week. I tell her please stop coming. I worried about her going into labor. Monday comes and they tell me I’m getting an ICD pacemaker defibrillator combo. It’s delayed till Wednesday. I’m pissed because I’m worried I’ll miss my son’s birth as she’s delivering at Lowell general where I started. I did miss the birth. I went to bed at 11pm the night before my surgery and woke up to her texts at midnight saying she’s going into labor and the kids are with family and that she loves me. The next ten min I get a call from her mother saying my son was born and healthy. They texted a photo as I was being wheeled in to pre-op. I sobbed as I looked at the pics. I wanted to be there with her so badly. The next day I’m home with an ICD and instructions. 100% pacing. Biopsy soon after. Bronchial lymph node biopsy. Cardiac sarcoidosis confirmed along with going home with a collapsed lung.

I got prescribed a bunch of stuff as I left the hospital. Entresto, prednisone 40mg, beta blocker, all sorts of stuff. I didn’t understand at the time but we were trying to sort it all out and get my inflammation in check. My ICD had a wire dislodge and had to be replaced six months in for a CRTD for resynchronization therapy. Forgot that one! I recovered fast. After about a year I go into somewhat remission and I wean off the prednisone. I feel fine and confident at this point. Some days of fluid buildup but pretty good. Regarding the fluid buildup: With technically having congestive heart failure, I’d feel very bloated some days. Taking a diuretic with a potassium pill would help. It was never much. Some swelling in the legs. I could especially tell when my socks came off and appeared tighter than usual.)

Fast forward a year and I wake up to a horse kicking me in the chest. I ask my wife why she punched me in my sleep. She looked at me like I was crazy! “Oh no” I said, my defibrillator shocked me! It hurt. It was disturbing and very “shocking,” pun intended. My sarcoidosis was back with a vengeance. Back on prednisone in 2020. I gain weight this time. From 170 to 205 pounds at 5’5. I felt terrible. Bloated, Buffalo hump on back of neck, moon face. I looked old. In between all of this I got shocked another four times. Vfib and vtach. Some hospital stays, gastro issues related to congestive heart failure. Fluid build-up again.

2021 was my year though! I start getting better PET scan results, so we wean off prednisone and after a lengthy insurance battle, I’m approved for inflectra infusions, a Remicade biosimilar. After maybe 6 months of infusions I’m in complete remission!!!! I feel AMAZING. Like pre-sarc amazing. At 5mg prednisone indefinitely, a baby dose, I lose 70 pounds from diet and cardio. Down to a trim 135 pounds. Eventually my pacemaker was put on a stand by mode and the most recent good news is I’m no longer pacemaker dependent! I’m 39 years old, back in the gym weight lifting and living extremely healthy. Career is going great, life is good! I’m heading towards the best years of my life with cardiac sarcoidosis in the back of my mind as well as possible arrhythmia. I take 200mg amiodarone every other day to keep my arrhythmia at bay. I don’t have any side effects from the amiodarone. We monitor my blood work all the time to watch for thyroid issues. I’m far too young to be on this med but for now they’re willing to keep it at every other day.

Remember I was mad about my pacemaker surgery being delayed and missing my son's birth? If that didn’t happen and I only got a regular pacemaker, I would have died in my sleep at 37 years old and missed his entire life. For that I’m thankful. These days I keep busy with my fitness goals, being an admin of the cardiac sarcoidosis group on Facebook, and enjoying life. I take nothing for granted. I’m big into rock and roll and related fashion, and after my diagnosis I realized life is too short. I made sure to dress and look the way I wanted to, going from a preppy guy to a longhaired badass. If you’re reading this, you might have been diagnosed recently. I know you’re scared but it can all be sorted out, I promise!!!