Before my heart disease journey began in Spring 2019, I was a passionate and dedicated educator and led a dynamic and fulfilling life. I was very active and busy with work, church, and my beloved Sorority of Delta Sigma Sorority, Inc. I never had any health issues. I exercised regularly and ate a very healthy diet. Then, rather unexpectedly, I was diagnosed with Sarcoidosis after several visits to the doctor.
I first began experiencing lesions on my scalp that would not heal. After several visits to my primary care physician and a local dermatologist, and several trials of medications without success, I was referred to a dermatologist about an hour’s drive from my home. This dermatologist examined my scalp and asked other questions about my health. After asking me many questions about my symptoms, the dermatologist stated that my symptoms were similar to Lupus. He performed a biopsy on the lesions on my scalp. A few weeks later I got the results, and it was Sarcoidosis.
Now, the only thing I had heard about Sarcoidosis was that the comedian Bernie Mac died from complications from this disease. There is no prior history of Sarcoidosis in my family. My diagnosis came as a complete shock and disappointment. The dermatologist immediately began injections into all the lesions on my scalp. After several painful injections, I drove home numb trying to process what had just transpired. These injections lasted for a few months until the lesions started clearing up.
I had no other symptoms, so I wasn’t as anxious about the diagnosis any longer. Then in the fall of 2019 as I was preparing to go to work, I started exhibiting shortness of breath, palpitations, lightheadedness, and fatigue. This went on for a few days and kept getting worse. I thought I could cure the symptoms by taking naps and walking slower. At no point did I think it had anything to do with my heart. But as the week progressed, my husband took me to my doctor. My doctor was out on vacation and a physician’s assistant (PA) examined me instead. He ignored my symptoms and indicated that I was simply experiencing anxiety due to menopause. So, he prescribed me an antidepressant medication. Not what I was expecting to hear from a medical professional.
After another few days with these symptoms, my husband took me to the Emergency Room. After an EKG and blood work, nothing was found. On Monday morning I went to the same hospital for a stress test. As soon as I started walking on the treadmill for a few moments, the attending doctor noticed my heart rhythm and rushed me off the treadmill and to the ER. This time the doctor indicated that my results indicated arrhythmia and that I needed a pacemaker.
I was transported by ambulance to Duke University Hospital that night and underwent many diagnostic tests. The electrophysiologist explained that I would need a pacemaker with a defibrillator (ICD). He said that the Sarcoidosis had caused severe myocardial and fibrosis scarring in the atrioventricular (AV) node (the electrical function of my heart) which caused 4th-degree heart block. The electrical impulses in my heart were abnormally fast (ventricular tachycardia) which caused the right ventricle to beat excessively fast. Sustained VT’s results in lowered blood pressure, lightheadedness, syncope, and shortness of breath. A day later, I was surgically implanted with an ICD. I could finally walk without palpitations and feeling faint.
Thus began the many appointments at Duke with a cardiologist and an electrophysiologist. I also began seeing a rheumatologist who specialized in Sarcoidosis and the many medications to control my heart failure and Sarcoidosis. After beginning a regime of immunosuppressant medications, several traumatic ICD shocks and suffering a stroke, I found myself at end-stage heart failure. My cardiologist said that I could be looking at a heart transplant very soon.
The heart failure effects began affecting me. I was severely fatigued all the time and the ICD kept shocking me. Each shock was further weakening my heart. After a right catheterization, my cardiologist gave me his honest assessment: I was on all the best medications available, and they were not working. My only option was a heart transplant. Only two years after my initial Sarcoidosis diagnosis, I was admitted into Duke University for the heart transplant evaluation and told I would not leave the hospital without a new heart. I was listed as Level 2 on the transplant list. Miraculously, three days later I received the very best gift of life from my donor.
Post-surgery, I underwent physical and occupational therapy to restore the capacity to stand and walk. With the support and encouragement of my family, I successfully completed a 12-week cardiac rehabilitation program — a true testament to my unwavering spirit. Although a complete recovery still poses a lengthy and challenging journey, each day is a step closer, thanks to my donor’s family’s decision to register as an organ donor.
Just like everyone’s experience with Sarcoidosis is different, transplant affects everyone uniquely. I am so grateful to have finally gotten a diagnosis so when I began experiencing the heart issues, the doctors already knew what was causing it and treated me appropriately. I am committed to living a Sarcoidosis-free life and not allowing this disease to affect my new heart. My goal is to maintain a proper diet, stay physically active, take care of my mental health, remove stressors from my life, and remain positive even with the thought of possible organ rejection.
Click here to learn more about Cardiac Sarcoidosis.
Author: Tina C. Tasker