My Heart Health Story: I Was Misdiagnosed and Suffering From a Rare Congenital Heart Defect

My life is not "go, go, go" all the time like it was before. I rest more, eat better and take some time for myself. I think we all get used to doing too much and learn to ignore minor ailments or fatigue because that is what women are programmed to do.
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As a heart disease survivor, I can say I have truly battled this deadly disease. I hope my story shows women everywhere the power of being your own advocate in the health care system.

On May 3, 2011, I gave birth to my third child, a son, at 5 pounds 15 ounces. I had experienced no medical complications during the pregnancy associated with any matters of the heart. After giving birth, three days later I noticed swelling in my legs, feet and hands that had not been there before. My husband and I expressed our concerns to the delivery doctor and were assured it was nothing to be alarmed about. At my first post-partum check up two weeks later, I explained my concerns of my developing cough, lack of energy and inability to lay flat. Again, I was assured it was nothing to be concerned about and was told to use my asthma inhaler more. Another week passed with my symptoms worsening.

On June 10, 2011, I attempted to run some much-needed errands, and in doing so I found myself becoming very ill. I was unable to lift my now 5-week-old son in his carrier out of the car and into the bank, and carrying just him was a struggle. Not knowing what was wrong, I stopped and grabbed a burger, thinking some food might change my growing weakness and inability to breath. My husband and I went to run one last errand together, and by the time we were finished I was so short of breath and weak that we had no choice but to return home. My husband suggested I take a nap with the baby and try to rest. I remember entering my bathroom, but the next thing I remember was my husband shaking me saying "Kisha, get up, what's wrong" and him cleaning my face. Evidently, I had passed out and vomited. Once my husband carried me into our room and began asking me what was wrong. I was so weak and short of breath, I could not answer.

The paramedics were called, and I was rushed to the emergency department with what was believed to be a severe asthma attack. While in the ER, the medical staff continued to treat me for an asthma attack. After receiving nine nebulizer treatments, a chest X-ray and CT were ordered, which revealed an enlarged heart and a blood clot inside of my left ventricle. I was diagnosed with Post-Partum Cardiomyopathy, given medications for treatment and prescribed a defibrillator vest to wear continually. By the end of July, it was discovered that I had been misdiagnosed, and that in fact I was suffering from a rare congenital heart defect, Non-Compaction. My family and I were informed that there was no cure, and I would ultimately require a transplant. I underwent numerious testing and three surgeries within 24 hours to prepare me for transplant listing.

Between September and November, my condition declined tremendously, requiring me to be hospitalized continually. On Nov. 22, 2011, my condition took a turn for the worst, and I had to have an emergency open heart surgery to implant an LVAD (left ventricular assist device) to assist my heart to beat. Seven days later, I underwent a second emergency open heart surgery to remove a blood clot that had developed between my heart and the pump. Within days of being transferred from ICU, doctors informed me that although I had an implanted defibrillator and heart pump, my heart was too weak for me to leave the hospital. I would have to remain in the hospital until a donor match was found, and given my rare blood type and my antibody levels things were not in my favor.

On Dec. 17, 2011, doctors announced that a match had been found. I underwent a 7.5-hour surgery to receive my new heart. It was a success. Finally, on Jan. 12, 2012, after nearly a nine-month stay, I was discharged to go home to my 8-month-old son and family. I was thrilled to finally be home, and I did well for nine months. However, on Oct. 1, 2012, I found myself back in the hospital fighting for my life in full-blown complete rejection. After undergoing an emergency procedure, receiving multiple treatments and medications, with all odds against me, I pulled through. I was released on Nov. 7, 2012 and have been doing well ever since.

My life is not "go, go, go" all the time like it was before. I rest more, eat better and take some time for myself.

I think we all get used to doing too much and learn to ignore minor ailments or fatigue because that is what women are programmed to do.

Now I am passionate about telling as many women as I can to fight for their health and speak up when something doesn't feel right. Fight to be heard, fight for a correct diagnosis and fight to beat all odds. I am a proud national volunteer for the American Heart Association's Go Red For Women movement and am working to educate as many women as I can about heart disease. I want more women to pay attention to any changes in their health and see as many doctors as necessary to be sure their voice is heard.

For more on heart disease, click here.

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