I remember the doctor asking me if I knew that I had a heart murmur. I had never had a heart problem before. I was given two diagnoses at first: atrial fibrillation and a mitral valve prolapse.
About five years later, my husband was transferred to a new state for his job. A new state meant new doctors, and I saw a lot of doctors. They all seemed to struggle with my heart condition.
They’d listen to my heart and pause. I knew they’d hear something, but they weren’t sure what to do about it. I wore heart monitors for a number of years to try and figure out exactly what was going on.
From Bad to Worse
I started to show other symptoms including extreme heart palpitations. My husband would drive me to the hospital because I also had shortness of breath and left arm pain. We were scared that I was having a heart attack.
The doctor at that time was treating me for each symptom. I experienced dizziness, so she gave me medicine for vertigo. That medication caused migraines, so she gave me another prescription. I ended up on 13 different medications, and I was getting worse.
I ended up in bed for four months; I lost 30 pounds in three weeks. I had to stop working as a real estate agent because of the dizziness; I could no longer drive my clients around.
During one of my visits to this same doctor, I went in with concerns because my heart felt like it was bursting out of my chest. She told me, “Oh honey, you’re just anxious.” She gave me a box of Prozac.
I had a neighbor who was in nursing school at the time, and she would take my blood pressure a couple of times a week. She told me, “Deb, you have to get away from this doctor, or she’s going to kill you.”
I felt like I was going to die. I began to sit and watch the clock.
Learning My Family History
While searching for a correct diagnosis, I lost three family members to diabetic-related heart issues. At this point, I was desperate for answers.
I started doing my research to learn my family history. I asked my doctor to run a test to look for thyroid disease, as my mom had struggled with it. The results came back and my levels were extremely concerning.
I was prescribed Propylthiouraci to help with thyroid function. The goal was to get my thyroid levels down, or else I could go into a thyroid storm, which is like a stroke. I then took what the doctors call the “radioactive cocktail,” or radioactive iodine therapy (RAI). It was 2000 when I was finally diagnosed with Graves’ disease.
20 Years of Misdiagnoses
At the same time that I was learning about my thyroid issues, the doctors are still investigating my heart. I underwent cardiac catheterizations and chemical stress tests, which were frightening.
They were looking for blockages but weren’t finding any. I finally met a cardiologist who said, “I’m a plumber, and I’m thinking you need an electrician,” and he referred me to an electrophysiologist.
I was misdiagnosed for 20 years. It all started with that mitral valve prolapse diagnosis in 1989 until I received the correct diagnosis of cardiomyopathy. I also have Afib, Graves’ disease, and type 1 diabetes.
My diabetes journey started as gestational diabetes during my second pregnancy. I was never told anything about the correlation between heart disease and diabetes, so I wasn’t too concerned about my blood glucose levels until they reached 683. I was misdiagnosed with type 2 diabetes at first. I now know it’s type 1, and I have been on insulin ever since.
Things improved once I had the right team of doctors. I had a pacemaker installed in 2009 because my heart rate was continuously dropping. The pacemaker changed my life for the better.
Finding My Own Way
We give a lot of authority to doctors, but you have to advocate for yourself. I’ve built a really good relationship and rapport with my current doctor. This is crucial because I feel comfortable asking questions.
I became an advocate to change the trajectory of where I was going. I was tired of living in fear and not understanding what was happening inside my body.
I knew the risk factors that I was living with, so I had to make a choice. I could either wait to die, or I could become proactive. I got involved with WomenHeart to make sure that other women felt confident speaking up and asking questions. I want people to know their family history and understand their test results.
As part of my self-care and advocacy, I got involved with GirlTrek a national organization created by two Black women that encourage women to walk to improve their health. Walking has certainly improved mine. It’s cheaper than a gym, and it’s easy to do.
I’m now an inspirational writer, speaker, and poet. I started my own LLC called She Speaks From a Joyful Heart, and I have a poetry book coming out in May! I’m so grateful to still be here to tell my story.
