I’m 36 years old. Mom of 2 precious children (7 and 5 years of age). I was an extremely active elementary school teacher but I am currently on disability since being sidelined by chronic angina in 2015. I am writing to share my story about living with coronary microvascular disease. It is notoriously difficult to diagnose and even more difficult to treat and unfortunately I have experience with both aforementioned.
I was diagnosed via symptoms in 2016 after finally finding a cardiologist in Canada who has a special interest in CMVD. This diagnosis came after two years of being dismissed, mistreated and turned away by doctors and specialists. I have no history of diabetes, hypertension, obesity or CAD. I do; however, have a family history of early heart attacks and a history of high stress.
I experience daily chronic angina (radiates to arms, shoulder blades, jaw, wrists and sometimes teeth), palpitations, shortness of breath, crippling fatigue, dizziness, near syncope, headaches and various other diffuse aches and pains. My symptoms began after an extremely complicated and traumatic pregnancy in 2013. Initially, my symptoms were exercise intolerance (which was a red flag considering how conditioned I was), fatigue and serious anxiety. Then I would experience periods of diffuse chest discomfort and fatigue. These symptoms would come in waves, lasting for weeks then disappearing for months. Eventually the time between episodes became shorter and shorter. Every time I would present to a doctor or an emergency room, my symptoms were always deemed benign after cardiac workup showed nothing of significance. Then one day in September 2015, the chest pain came and it never left.
My angina and related symptoms can present at rest, during exertion, times of emotional stress and even by projecting my voice; however, the most troublesome symptom I deal with is what I refer to as “the delayed effect”. The delayed effect happens when I have over done it and not paced myself, not scheduled in the required rest stops or have done an activity that I know will cause symptoms (folding laundry, singing, vacuuming, etc). I will experience some discomfort during an activity but if I have overdone it, my symptoms will escalate hours after the activity has been completed and stay present for hours, days and even weeks later. I refer to it as a bad “flare” or “cycle”. All of this makes it difficult for me to gauge what is a safe activity for me and what is not until it’s too late.
Diagnosis has been an arduous road for me. As we are becoming more and more aware about the flaws in our tests for cardiovascular disease (especially how they relate to women’s heart health), I am hoping that by sharing my story and advocating for women’s heart health, fewer women will have to endure the years of dismissal, brow beating and disbelief that I endured (and still do at times). It is absolutely critical for women to advocate for themselves and ensure concerning symptoms are not dismissed EVEN in the face of negative test results.
My diagnosis was based primarily on symptoms as none of my cardiac work up has shown anything “significant”. That being said, I do present with ST elevation in lateral leads on ECG when my pain is bad, I have a mildly enlarged heart, my left atrium is moderately enlarged and I have borderline high indexed biventricular diastolic volumes. At at 36, I consider those findings significant but apparently I’m the only one. As I mentioned, I was very active, so many of my findings are attributed to many years of exercise and a well conditioned heart.
My life has become quite limited and accommodations need to be made for almost every aspect of my every day life. I obviously can’t do things I once loved to do like running or any type of cardio workouts, no bike rides, swimming or skating with my kids. Walking outside can be tricky as I cannot walk uphills, in cold, in wind or heat.
Not only can I no longer work, but I cannot even volunteer in my children’s classrooms for fear I will overdo it; or simply cannot commit due to the unpredictability of the disease. I miss out on the little things in life like singing with my kids, playing with them, baking with them and all the other little things people take for granted.
I am a huge liability. Professionally,socially, physically and emotionally. I’ve seen many relationships fizzle and die because of my inability to commit. My marriage struggles and many of my family members are unsure of what to think when I look “ok”.
I’m currently taking 180 mg of Diltiazem and wear a .4-.6mg Nitro transdermal patch. Both of which do little to nothing to quell my symptoms. My BP and HR are low at baseline so a lot of the “go to” meds have been problematic for me. I’ve spent thousands of dollars on alternative treatments and functional medicine doctors only to be no further ahead. Ativan appears to work for me and relax my vessels enough to sometimes help me get out of a bad cycle of pain. Other than that, I have not found anything that helps to ameliorate my quality of life.
To thrive with a disease like this, I have found I must be very aware of, not only my physical self, but also my emotional self and ensure I am staying as positive as I possibly can. In doing so, from my couch, I have become a heart warrior and an advocate for women and heart disease, especially for women with coronary microvascular disease who tend to be more at risk for being under diagnosed and under-treated.