“Patient advocacy and peer to peer support is the cornerstone of strength for one's journey.“
I am a survivor of heart valve disease. My journey began at a routine physical when my primary care physician detected a heart murmur. Upon being referred to a specialist, I was told that I had Mitral Valve Prolapse. I was given the option of taking beta blockers that would “treat” the palpitations that I would occasionally feel but did not attribute to the newly diagnosed heart murmur. Uncomfortable with that type of generalized prescription, I sought a second opinion.
After several years of annual echocardiograms, stress tests and a watchful eye, I was diagnosed with a leaky mitral valve. In October of 2012, I was advised that the results of that year’s echo demonstrated that my mitral valve regurgitation was becoming severe enough that I should consider surgery while I was young and healthy. The irony of the situation is that externally I wasn’t feeling anything but what I had grown accustomed to as part of my daily living – heart palpitations and fatigue which I attributed to the overall stresses of everyday life. However, internally, I began to exhibit signs on my echocardiogram that my left ventricle was becoming dilated as result of the heart working harder to pump the blood that was regurgitating backward, thus not pumping efficiently throughout my body. While I struggled with the concept of having surgery at such an early age, especially being in optimal health, I was advised that a repair to the valve is more advantageous than a replacement. The hardest pill to swallow was the fact that my disease would only get worse as time progressed.
After many questions and answers, hesitations, fears of the unknown and all the “what if’s”, I scheduled the surgery. I chose to have the traditional open heart incision even though I was an optimal candidate for the robotic minimally invasive procedure. I was not overly concerned about the cosmetic appearance of the scar post surgery as much as I wanted to minimize any risk during the operation. Open heart surgery has become so advanced that I was comfortable with my heart being in the hands of world-renowned surgeons and cardiologists at Northwestern Medicine – Bluhm Cardiovascular Institute.
Preparing for Operation Backward Blood Begins:
“Operation Backward Blood” was the moniker that I chose for my surgery. This was based on my condition in which my heart’s mitral valve doesn’t close tightly, allowing blood to flow “backward” in the heart. If the mitral valve regurgitation is significant, blood can’t move through your heart or to the rest of your body as efficiently, making you feel tired or out of breath. Symptoms often times are under diagnosed as they can be attributed to aging, poor physical health or misdiagnosis.
In preparation for Operation Backward Blood, I researched what I could from the limited resources available at the time, to dispel my anxiety, uncertainty and fears of what I was about to encounter. I made my lists and checked them twice. I also reached out to my surgeon to ask if I can speak to patients that have experienced this procedure similar in age to me and was finally ready.
On June 13, 2013 a Mitral Annuloplasty Ring to repair the mitral valve as well as repair to the chordae were completed.
My recovery from open heart surgery was not an easy road by any means. I encountered many frustrations and struggles with my slow and oftentimes road blocks to progress. During the first few months of my recovery, I had to have three cardioversions and a cardiac catheter ablation that was caused from the newly developed post-surgical atrial flutter and a-fib. My participation in the 13 weeks of cardiac rehab became inconsistent as I would arrive for class only to find that my heart rate would elevate as high as 185 beats per minute accompanied by lightheadness, low blood pressure and fatigue. (A normal resting heart rate is anywhere from 60-100 bmp) As a result, this caused great anxiety, concern, worry and disappointment counterproductive to recovering from heart surgery.
It took almost a year and a half for things to improve, yet I committed myself to reconditioning my heart. I joined a local gym offering high-intensity kickboxing classes, building on martial arts experience from my high school and college years after getting a cardiac release from my cardiologist, who was equally excited for me to get back into a fitness regime. I knew from previous experience with the martial arts that it would be good for me to “get back in the ring and take another swing.” At my gym, I was given the fighting name “Queen of Hearts” as I have made it my mission to “kick out” heart valve disease one beat at a time.”
I recently celebrated my 7th year anniversary last June during the COVID-19 Pandemic and while Operation Backward Blood has been elevated to “Mission Accomplished” status, one more mission remains. There is still plenty of fight left in me, and it is my personal mission to keep fighting with Heart by paying the love and support that I received from my family and friends, forward to those enduring similar heart journeys, that may not have the support and encouragement from others.
As a Heart Valve Patient Ambassador, I hope to be an inspiration to others, especially to women. As I have come to know, heart disease affects 1 in 3 women, and it most certainly does not discriminate. When followed carefully by expert medical staff, with treatment timed right, women with heart valve disease can leadnormal active lives. I have found that I can maintain my vigorous lifestyle and not be destined to a life of limitations.
Through the hard work and dedication to research, education and amazing advances re: valve disease, my mission has begun. During my preparations for surgery, I kept a list of tips and tricks from a female’s perspective that I wish I would have known before heading into surgery. I also created a list of detailed questions for my surgeon. Both of these important topics I have been able to share with other patients as a patient advocate. As I have found, medical staff will provide the clinical explanations of the heart, but it is the survivors that can help you understand what it is like to prepare and recover.
Patient advocacy and peer to peer support is the cornerstone of strength for one’s journey. Mind, body and spirit must become one, both before surgery as well as post surgery. From the “what if’s” and the ” why me’s” “to will I survive surgery” that run through your mind, the pain and healing that your body experiences post surgically, to the spirit of peer to peer support, compassion, and encouragement that I can provide to others, lending my voice to heart valve disease has been an important part of my journey.