Born in Delaware, grew up in Bucks County, PA (USA) 53 year old caucasian female Professional in pharmaceutical industry Married Diagnosed with Cardiac Sarcoidosis in April 2018 at age 50 Covid Vaccination (Pfizer): (1) Feb/21 (2) Mar/21 (Booster) Aug/21 - No real side effects ; Flu vaccine Oct 12/21

Hello fellow cardiac sarcs. My name is Kathy from Doylestown, PA and I have been a part of the Cardiac Sarcoidosis Facebook group I think for more than 2 years. I am 53. I am happy to be able to tell my story to others affected by cardiac sarcoidosis, who I know will understand. Except my husband, even my family cannot understand what this disease has done, how very serious it is, and can be, and what it can do in the future. This leaves me with constant anxiety as to what my health might be like in the future. In addition, I think it is very perplexing as to what may have caused this disease to begin with, since it is clearly an inflammatory disease. Was my stress that bad? Was it environmental? I am a medical professional. I am a Nuclear Medicine Technologist by background (stress testing, PET scans, bones scans, etc), but now work on immunotherapy clinical trials for a pharmaceutical company (about 15 years).

In the summer of 2017, I was complaining of shoulder and forearm pain (this is a symptom of cardiac sarcoidosis). It hurt the same on both sides, so we thought it could possibly be arthritis. No tests were conclusive though, when I went to the rheumatologist. I actually switched docs a few times (I never do that), but did not feel the rheumatologists were digging deep enough. At this time I was a pre-diabetic (I am overweight, and it is hereditary).

In Dec 2017, on Christmas eve, I experienced fluttering or a weird sensation in my chest that made me feel terrible, so I thought my sugar was running low. It was normal. Then, one weekend in January 2018, I again had a weird feeling in my stomach and chest after shoveling snow. I projectile vomited for no reason…. I am in the medical profession, for God’s sake, and should have known to go to the hospital. I took a nap and felt better. On January 17, 2018, just a couple of weeks before turning 50, I passed out at work after I was starting to feel light headed (“light headed” meaning literally my head would go BLACK, and then I would come back) and got that weird, nauseous feeling in my stomach again (which I now know means I am going into a ventricular tachycardia (vtach) rhythm).

They took me by ambulance once finally someone was able to awake me in the ladies room, and kept me at the hospital for 24 hours in the ER before I was even assessed by a cardiologist. I thought it was nothing, and was not familiar at the time that in cardiology, a cardiologist either specializes either in “function” or the “electrical” part of the heart. A cardiologist sat with me for a very long time because my story did not seem “right.” He really thought I was having a cardiac adverse event to the meds I took for arthritis. So, I had a cardiac cath. Clean as a whistle. I had to see an EP. This was late on a Friday afternoon. They were planning to do more cardiac tests on Monday, so I had to stay for the weekend. I was hoping to go home and come back. I begged to go home. But an angel was with me that night, and I am forever forever grateful they made me stay. This was the start of many miracles I experienced during my hospital stay.

I went back up to the cardiac unit at the hospital. My family had left about an hour before, and I settled into my room. My husband was coming over to bring me some dinner, but he waited in line at Chik Fila for like 30 mins, and was running late. Thank God he was late. Thank God. A nurse had recently been in to visit and we talked. I felt fine. Within moments, I knew I’d black out, hit the nurse button, and blacked out again. I coded and had to be resuscitated and woke up to the paddles right above my head. The weird thing is, I remember a whole lot of that. They immediately transferred me to ICU (my husband arrived just to see that happening), with my heart rate ranging from like 38 to 328 bpm. I had to be treated with amiodarone IV (which regulates heart rate) basically all night. I probably coded 10 times. I could hear them talking about it and about me and I was so angry. They were saying it was another crazy Friday night in ICU as my nurse hit the code button probably ten times. I was like, “I am aware of what’s happening! I can hear you talking about me.” But, honest to God, the ICU nurse I had and the cardiologist who spoke to me earlier in the eve and was on his way home, never left my side, all night. God bless them. I know that cardiologist was calling an EP expert at Temple Univ, where he trained, and asked for help with how to treat me. And my husband witnessed all of it. Gosh, I felt and still do feel so badly he saw this. I think he has PTSD from this more than I do! My family came back that eve because they really did not know if I would make it through the night. It was so amazing how things changed so fast and I just remember saying to all of them, “I know this is not good. You have to help me. Please help me.” They couldn’t believe I was so lucid. So, I made it through the night, was stabilized, but was TERRIFIED to close my eyes and fall asleep for many nights.

That Monday they installed an AICD (defibrillator). So many new things so quickly. So many questions. I went home several days later but they didn’t know why I had this cardiac issue. While in the hospital, I had the cardiac MRI, and it showed “scar.” I went home on 200 mg / day of oral amiodarone. Remember, they were giving me amio for days via IV. Amio saved my life for sure. It was my safety blanket for about 18 months. I was afraid to be off it.

Those healthcare workers also saved my life, many many times. I am still so grateful. This experience changes how you see life. It is so precious!

Amio has a 90 day “half life.” So right around the first week of April 2018, I was home, because when this happens, you can’t drive for six months. On a Wed 2 days before the scheduled cardiac PET scan and one day before I needed to follow the crazy, low carb diet, the AICD went off. OMG! It brought me to my knees and my kitchen table caught me. There were really no symptoms prior to the shock except that new uneasy feeling I get in my belly, and feeling everything will go black. I was like, “Oh crap! I can’t believe I got shocked.” So, I spoke to the Radiologist (I happened to know him from previous clinical trials we did with him), and he said let’s do the test anyway. Did the test. Was clearly positive. By that Saturday, I was feeling badly again and my sister happened to be there with my niece because I couldn’t drive. I passed out again, was shocked and they witnessed it. I was like, “Oh crap! Twice in three days.” I felt so badly for them. After the shock, I felt better. They called 911. Ambulance pulls up and is like, “Who is the patient?” I said,“Me,“ and walked into the ambulance. Long ambulance ride to Temple Univ Hospital. Immediately put on my life saving drug, amio, via IV. I begged for it, but thank goodness they knew what to give for vtach. Spent another few days in the hospital and my specialists came to see me and concluded I went home with too low a dose of amio, and have all of the symptoms of isolated cardiac sarcoid. I just needed a cardiac biopsy (which was negative, but we knew it could be inconclusive). So, immediately, while in Temple Univ Hospital, they upped my amio to 400 mg/day, 50 mg metoprolol, and 60 mg prednisone.

My cardiologist, rheumatologist, and EP cardiologist are all from Temple. Beautiful, great, awesome set of doctors. I can get ahold of them very easily. I am constantly monitored with the transmissions from my AICD. I LOVE these people, and they care! Thank God. A cardiac problem is constantly scary as you have no idea what it means when you feel a little twinge or funny feeling. This team knows me and is learning about my condition. This disease is so unusual they say they do not know a whole lot about it, esp since it is isolated to my heart. They all talk about me as a team. My rheumatologist manages my meds. She is great. We reduced the pred over time. She took me off it at about one year since the initial event. I had so many side effects with the pred: tiredness, moon face, hump on the back of my neck, weight gain, hair loss, moodiness, etc….ugh. And so many meds to counteract the pred! So because she took me off pred I had another PET scan, and the disease was active. So they added 25 mg/week of methotrexate and put me back on 40 mg of pred daily (so so mad and disappointed to start pred again!), and over 15 months, now reduced to 5 mg pred daily. Again, pred is TOUGH, but it totally helped/s my cardiac sarc. Just had a recent PET scan, after about 3.5 years with this condition, and it is “quiet.” No evidence of the disease right now. So, we are going to try and continue to reduce pred again, but I am really worried that I need to stay on at least some. As we taper to a couple of milligrams. I may need to try Remicade. We will see. I just don’t want to rock the apple cart because things are pretty good right now. Because I only take a small pred dose, I have more energy and can work full time, exercise 3-4 x/week and try to eat well. But I am still overweight. I am also a full blown diabetic now (insulin dependent) due to the steroids. Still have a high A1C, which my endocrinologist says is due to pred. But I try EVERY day!

It is on my mind EVERY day!

I went off of amio as I was on it for about 18 months because the cardiologists told me it can have long term affects, particularly a purple nose and limbs (hands). I don’t take calcium since they say the granulomas in my heart could be of a similar makeup. For supplements, I DO take vitamin D, fish oil, turmeric (helps with inflammation), zinc and vitamin C. In my shakes, I put cinnamon. For medications I take Fosamax, prednisone, metoprolol, lisinopril, methotrexate, metformin, lipitor, Humolog, lantis, and leucovorin. If anyone wants to know strengths, I can provide. Side effects from methotrexate….I was tired for several doses, but I am used to it now. I take ten pills on Saturdays. I break it up between morning and eve, to combat the tiredness. I also take Fosamax for bones, and the need for it is absolutely due to whatever prednisone might do to your bones and teeth over time. I have gotten two bone density studies (DEXA) to monitor the affects of prednisone. So far, so good.

I also see a cardiologist, Dr. Nisha Gilotra, MD, at Johns Hopkins. She specializes in cardiac sarc. So my Temple docs discuss and agree after I see her two x/year.

As my EP would say, all is almost back to normal, but I know I have to constantly be careful with COVID. I won’t take a trip to a remote area or go to a concert or something big like that, because I cannot risk not being near a good hospital. So many appointments. So many specialists. But, the key to this is to monitor. Go to your appointments. Be YOUR own advocate. I am fully vaccinated for COVID and also got my booster, but no reactions any time, so not sure how many antibodies I actually DO have. I also got my flu shot…no reactions. Over time, try to get off meds that might be toxic in the future. Also, I have been trying a more plant-based and Mediterranean type of diet. Planning is key (believe me, I have not yet perfected this!). I try to stay away from processed foods, fried food, fast food, and rarely eat red meat. The hardest for me is candy. I think I crave it because I am a diabetic. I know I’ll never have a normal ECG, and as time goes on I could go into heart failure. What does that future look like? Not sure, which is why I am trying so hard now with the current lifestyle.

I used to live my life a thousand miles an hour, every day; worked so hard always. I have now realized I don’t need to do that to live life. It is about balance. My health is THE most important thing. Also, I have realized during this tough time that sometimes we all need help. And now I know when to ask for help (no more shoveling snow). I try to be sure to stretch, take time to reduce my stress (I really think this came on from stress). And just continue working on getting that prednisone weight off! I try to make good choices and make little changes each day.

If anyone wants any more info from me, I’d be happy to share. Email [email protected] or join the Cardiac Sarcoidosis Facebook group. Thank you for reading my story. I hope this was helpful. It was helpful to me.

Thanks,

Kathy