• Born in Illinois, grew up in Westchester County, NY and have lived in Connecticut since 1987. (USA)
• 61 year old caucasian male.
• Married with three grown children and four grandchildren.
• Diagnosed with Cardiac Sarcoidosis in May, 2021 at age 60.
• Covid Vaccination (Pfizer): (1) 3/10/21 (2) 4/7/21 (Booster) 9/21/21 - No real side effects to speak of other than sore arm and slight headache.

I had been sailing along for 60 years with no major health issues other than having high blood pressure, which was diagnosed and treatment started in my 40s. In the first week of March, 2021, I experienced a pretty intense issue of tightness in my chest accompanied by significant shortness of breath. I wouldn’t describe the chest tightness as painful, just a very perceptible squeezing which intensified over the course of a few hours while I was at home. While I wasn’t sure, I became increasingly convinced I was having a heart attack and I finally relented to my wife’s wishes and went to the ER, with the stubborn caveat that she drive me there ... no ambulance.

In the ER, tests showed no evidence of heart attack, but the doctor informed me I was in AFib and they were going to admit me to the cardiac telemetry floor to have me monitored and treated. Chest X-Ray was done and the tightness in my chest and shortness of breath persisted as I was moved into a room. When I say “shortness of breath,” at no time was I really gasping for breath, but I would describe it as every 30 seconds or so, I would have the feeling that I was a breath behind what I needed and I would have to pant and grab some air to catch up. As a result, I was completely unable to get comfortable laying on my back or side in the bed and the only way I could get any relief was to sit up in a reclining chair that they moved into my room. I actually didn’t sleep from Wednesday night when I was admitted until Saturday night when they finally got things regulated enough that I could nap a bit, still sitting up.

I will leave out lots of details, but during this 6 day hospital stay, after CT scan, echocardiogram and an ultrasound on my legs, the cardiologists and pulmonologists diagnosed me with pericarditis, mild acute heart failure and inflammatory irregularities in my lungs, likely associated with the CHF and a DVT in my left leg. The echo on March 5 showed my LVEF to be “the low side of normal at 50-55%” per the cardiologist’s report. When they got my AFib into a more controlled and satisfactory pace, they discharged me with lots of follow-ups for the coming weeks.

I had another CT scan with contrast in early April which showed mildly enlarged lymph nodes in addition to other inflammatory “shadows” in my lungs. A TEE and Cardioversion was scheduled for the third week of April to take care of the AFib. The cardiologist aborted the procedure with no shocks delivered because the TEE showed a blood clot in the left atrium. I was already on a blood thinner due to the DVT found the previous month. Throughout the month, I continued experiencing the shortness of breath, which, while it never got to the degree I had experienced the previous month, caused me lots of difficulty with sleeping and I spent most nights sitting up in a chair. The cardiologist, to his credit, for various reasons and test results and unbeknownst to me, began to become suspicious of sarcoidosis and ordered a Cardiac MRI for me on May 4.

A Cardiac MRI on May 4 showed severe biventricular dysfunction with my LVEF having dropped to 20% and the gadolinium enhancement imaging was “highly suggestive of sarcoidosis.” The doctor called me the same afternoon he got the results and consulted with my pulmonologist, and asked me to check into the hospital so that the pulmonologist could do a biopsy on lymph nodes to confirm the sarcoidosis. He briefly explained to me what sarcoidosis was but of course I had no idea what he was talking about. Unfortunately, the biopsy of the lymph node came back as “inconclusive,” but various markers they told me about and after bringing in a Rheumatologist, the specialists all felt a high degree of confidence that the diagnosis of Cardiac Sarcoidosis was correct. They ordered a PET scan to further corroborate that diagnosis. In the meantime, they had me see a specialist from Columbia Presbyterian in NYC who agreed with the strong suspicion of Cardiac Sarcoidosis and agreed with the treatment begun by my current specialists and continues to consult with them on my case.

I saw an electrophysiologist who explained the arrhythmia problems I was having and the risks particularly associated with the ventricular arrhythmias I was at significant risk of and showing for some brief monitored periods and that I was going to definitely need to have an ICD implanted. With all of the inflammatory issues and blood clots etc, he told me that they couldn’t do that right away, and they wouldn’t let me leave the hospital without wearing a LifeVest external defibrillator.

The PET scan was done on May 25 and the results were bad. In addition to telling me that it “lit up like a Christmas tree,” they said my LVEF had dropped to an alarming 11% in three weeks. Pulmonology, Cardiology and Rheumatology all agreed that even without the smoking-gun of the lymph node biopsy, the PET scan confirmed Cardiac Sarcoidosis as the correct diagnosis.

I am thrilled that the treatment that these fine doctors have provided me, seems to be working extremely well. I have been on LOTS of medication in various combinations because of Sarcoidosis, CHF, Hypertension and Kidney failure. I started on 60mg of prednisone and they weaned me down on that dosage while adding and slowly increasing Cellcept at the same time. As of now, I am down to 5mg per day of prednisone and up to 1,500 mg of Cellcept 2x per day. The Electrophysiologist also added Amioderone in June. Additionally, Spironolactone, Entresto, Xarelto, Metoprolol, Atorvastatin, Vitamin D and Calcium are on my daily list.

In July, after confirmation that my DVT in my leg had resolved, the cardiologists rescheduled a TEE/Cardioversion for the Afib and it worked. I went back into, and continue to be, in regular sinus rhythm. Encouraging news from that procedure was that my LVEF which had dropped to 11% in late May, was back to about 25% at that point. I was feeling a lot better and the shortness of breath problems had disappeared through June.

They ordered another echocardiogram in mid-August and the heart was looking really good. My LVEF had risen back to 45-50%! The electrophysiologist and regular cardiologist agree that because of the sarcoidosis, my risk of extremely dangerous arrhythmias remains and I still need the ICD. Consequently, as of this writing, I have been wearing this LifeVest for 5 months! Just in case anyone reading this might have to deal with the LifeVest as a temporary insurance policy, I want you to know … it is a pain in the ass to deal with and it especially sucked over the summer, not being able to swim with my grandkids etc., but it honestly isn’t as cumbersome as I was afraid it would be at first and it is manageable on a day to day basis. The hardest part for me is sleeping, because I am a pretty active sleeper, and while the vest itself isn’t too bad, being tethered to the battery pack in bed takes some real adaptation.

That said, as I write this, today is my last day to wear this vest! Tomorrow morning (10/12/21) I am headed to the hospital to get the ICD. While any trip to the hospital and the whole idea of the ICD makes me a bit apprehensive, I am resigned to the fact that I need it and so I’m anxious to get it done, recover and get on with what my new normal is going to be.

To all of my fellow sarcoidosis travellers, I wish you good luck and good health. I pray that our doctors are given the wisdom to help us navigate through this. Remember that although, as we have all been told, this disease is very rare and incurable, it is treatable. I hope your treatment works for you and gives you comfort.