- When I had severe shortness of breath, my doctor suggested I should lose 10 pounds.
- When I struggled to draw a deep breath, a trip to the ER revealed I had congestive heart failure.
- I wound up having two heart transplants; now when it comes to my health, I’m my own best advocate.
Growing up with a congenital heart defect, hypertrophic cardiomyopathy, I was used to regular medical visits and always followed my doctor’s orders. I never had a reason to question anything I was told until a recent experience changed my life.
Shortly before my 36th birthday, while on a business trip, I had to run through the airport to catch my flight. As I reached the gate, black spots appeared in front of my eyes, and I realized I might pass out. Huffing and puffing, I boarded the plane, trying to ignore the feeling that something was not right. I then forgot about the incident until my regularly scheduled appointment with my cardiologist a few weeks later.
My cardiologist asked whether I’d experienced any shortness of breath climbing stairs, and I described the episode of almost passing out. He flipped through the papers on his clipboard and reviewed the data collected by the nurse, noting I had gained weight since my last visit six months earlier.
“I think you would feel better if you lost 10 pounds,” he said to me, then wrapped up the visit with no additional testing. Because I learned from an early age to listen to my doctors, I didn’t question his advice.
A pneumonia diagnosis revealed my actual condition
Several weeks later, I visited my family doctor multiple times for what started out as a fever and a cough. I was told I had the flu, which turned into a pneumonia diagnosis when the cough worsened, along with my shortness of breath.
When my difficulty breathing reached the point that I struggled to draw a deep breath, I went to the emergency room. While I was hospitalized, the facility was able to run more tests than my doctor could in his office, and I found out my heart was failing. My symptoms and my weight gain were due to retained fluid from congestive heart failure.
During this hospital admission, the cardiologist who had managed my care during my youth was visiting patients and came to my bedside with a horrible prognosis.
“This is the normal progression of your disease,” the doctor said. “Your heart will grow weaker until it stops. There is nothing more we can do for you.”
For the first time, I began to second-guess what my doctors had told me.
I realized I needed to educate myself on my health
When I returned home, I started researching my condition online. I knew embarrassingly little about my own heart condition. When I was a minor, the doctors spoke with my mother, who never relayed their information to me.
After I graduated to an adult-care team, I suspect, those doctors assumed I understood my condition because I had dealt with it since childhood. As an adult, I continued following doctor’s orders without question.
I scheduled an appointment for a second opinion at the Cleveland Clinic, where I learned about treatments such as pacemakers and heart transplants. While I received a heart transplant closer to home at the University of Michigan’s hospital, the Cleveland Clinic educated me on my treatment options.
I was shocked when I learned that I would need a heart transplant. Just months earlier, I was a healthy young woman enjoying the prime of my life. At first, I tried to seek another way to deal with my failing heart, but my condition rapidly worsened, leaving me dependent on oxygen and unable to walk from my hospital bed to the bathroom unassisted. Finally, I agreed to the transplant to save my life.
It took a heart transplant for me to learn how to advocate for myself more
Even after my heart transplant, I continued to encounter doctors who overlooked symptoms that were linked to serious health issues. Ten years after the transplant, I once again experienced frightening shortness of breath and went to the ER. After a few standard tests to rule out a heart attack, a young doctor came to the exam room to inform me everything looked fine. He suggested my symptoms could be attributed to early menopause.
No longer the docile, trusting patient I used to be, I demanded he call my transplant-care team. Further testing found that I was in severe rejection of my transplant heart. This had damaged my heart enough that I eventually needed a second heart transplant.
My advice to others who have received a devastating diagnosis like mine is to educate yourself and learn everything there is to know about your condition. Not all doctors and medical facilities are equal. There are centers that focus on treating specific conditions that may be able to provide care that local providers cannot.
Finally, trust your gut, don’t be afraid to question your doctor and speak up for yourself. Become your own healthcare advocate — a second opinion just might save your life.
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