After Years of Misdiagnosis: I Finally Found the Right Care Team

My health journey began 33 years ago when I was pregnant with my second child. I went into preterm labor at 26 weeks pregnant and was rushed to the hospital. Thankfully, my son was fine, but this event started me on a health journey I didn’t expect. 

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, a medicine 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 life-threatening. I then took what the doctors call the "radioactive cocktail," or radioactive iodine therapy (RAI). It was the year 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 atrial fibrillation (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 published a poetry book in 2022! I’m so grateful to still be here to tell my story.