Can you share your experience with heart valve disease?
I was diagnosed with mitral valve prolapse as a teenager; however I recall having symptoms for most of my life. I remember telling my mom when I was very young that at night I could hear “soldiers marching, but one of them isn’t doing it right.” What I was hearing (and/or feeling) was ectopic or irregular heartbeats while laying on my side with my hand supporting my head (I remember in my mind imaging the soldiers from the Laurel & Hardy movie “March of the Wooden Soldiers”). My mother wrote this off as a young child’s imagination – it was only years later after my diagnosis that we both realized what I had been experiencing.
What encouraged you to become a patient advocate?
I have been receiving wonderful comprehensive cardiac care at a major academic medical center since 2006 and trust my cardiologist of 19 years. Unlike the male cardiologist that I saw at a teenager who was dismissive of my concerns, my female cardiologist took my concerns seriously from Day 1, and as a result, we have monitored my mitral valve disease and arrhythmia closely with annual resting and supine bike echo studies and an annual Zio patch.
In late 2017, my supine bike echo was halted due to supraventricular tachycardia (SVT). I was referred to an electrophysiologist who recommended an ablation procedure which was completed in January 2018. Unfortunately, while the electrophysiologist identified two areas of focus for my ablation, to this day I continue to experience arrhythmia. My cardiac team recommended an implantable cardioverter defibrillator (ICD) – I have honestly been procrastinating getting this done which as you’ll see below turned out to be the right decision for me. I have always been interested in mitral valve repair surgery, and have kept abreast of developments in this area, including minimally invasive valve repair surgery. I believed that repairing my valve could potentially address much of my arrhythmia and wanted to do this first before moving forward with an ICD.
In May 2022, my routine annual echo showed that my left ventricular volume was moderately to severely increased, and there was severe left atrial enlargement. I was referred to a transesophageal echo which was performed on July 13, 2022. This confirmed that my left side heart had worsened since the May study, and I had progressed to “at least moderate to severe mitral regurgitation”. I was stunned. I had absolutely no symptoms. I was exercising regularly – hiking 15-20 miles per week on average, lifting weights and using the elliptical multiple times per week. No shortness of breath. No dizziness. My heart was compensating. I had an appointment with my cardiologist on July 23rd and asked about her criteria for referring me for valve repair surgery. She said that we should consider surgery if my ejection fraction decreased below 55.
That evening, I reviewed the 2020 ACC AHA Valve Disease Guideline and based on the Primary Mitral Regurgitation algorithm, I learned that I was a candidate for surgery and that waiting could result in a higher risk surgery later.
The next day, I contacted Stanford to set up a consultation. (It’s important to note that Stanford is one of only 5 medical centers on the West Coast today to be receive The American Heart Association and Mitral Foundation Mitral Valve Repair Reference Center Award. At the time that I referred myself in 2022, there were only 2 Reference Centers on the West Coast including Stanford. It’s great to see this list growing which will provide important access to medical centers with the expertise required to provide the best possible outcomes for patients living with mitral valve disease!) My husband and I visited Stanford on August 4 and met with Joseph Woo, MD, the Norman E. Shumway Professor and Chair of the Stanford Department of Cardiothoracic Surgery. Before we left, my minimally invasive mitral valve repair surgery was scheduled for August 24th. It’s important to note that Dr. Woo informed me that had I proceeded to get the ICD, I would not have been a candidate for minimally invasive surgery.
Within months of my mitral valve repair, my heart remodeled to a normal size and normal function was restored. While my valve repair surgery has not cured my arrhythmia as I had hoped, the amount of arrhythmia I experience has decreased which provides me with peace of mind.
How did you become involved with Heart Valve Voice US, as well as other heart health advocacy organizations?
I had the honor and privilege of working with Donnette Smith – she was a patient advocate for a disease education campaign that I produced while at Gilead Sciences called Speak from the Heart, as well as former President of Heart Valve Voice US. As a result of this work together, Donnette nominated me to be on the board of Mended Hearts. When she joined Heart Valve Voice US and asked if I would be interested in participating, it was an immediate YES!
On a personal level, Donnette’s support leading up to my heart surgery was invaluable – being able to talk to someone who had lived through what I was facing made such a difference. I remember her telling me that I would be disoriented when I woke up from surgery and I would be intubated – she said to just stay calm and breathe. This was so helpful! She’s the first person I thought of when I woke up, and I couldn’t wait to let her know the surgery was a success. I am eternally grateful for her support and friendship.
Why do you think it is important for other patients living with heart valve disease to share their story?
In general, real patient stories are highly impactful and valuable to let patients with a new diagnosis know that they are not alone, and that it is possible to survive and live a full life with valve disease with proper care. I hope through my story that patients will learn that you need to advocate for yourself. It is ok to seek a 2nd opinion (I honestly felt like I was cheating on my cardiologist when I went to Stanford, but I knew it was the right thing to do for me). It’s critical that patients are treated at medical centers with deep expertise in valve repair/replacement since this dramatically impacts health outcomes.
In your opinion, what can patients, health professionals, and advocacy groups do to continue raising awareness about valve disease?
Education tailored to each stakeholder group. Sharing real patient stories about how patients learned of their diagnosis, what signs/symptoms they may have ignored that they wish they had paid attention to earlier can benefit both HCPs and patients. Patients can help educate peers who are facing a new diagnosis about the journey they can expect ahead. For example, most people living with mitral valve disease do not need to have surgery – my story is not typical. Having a trusted cardiologist and monitoring valve disease to quickly identify when things change is critical.
Advocacy groups can partner with industry (medical device manufacturers) to develop campaigns to raise awareness and help patients self ID as having signs/symptoms consistent with valve disease and encourage those patients to see a cardiologist.
Note: It’s also important to highlight the challenges associated with navigating the healthcare system (to inform health policy).
What is one fun fact that others may not know about you?
I’m obsessed with mushrooms! I have a folder of images on my iPhone of mushrooms I’ve seen on hikes, in my yard, on the side of the road. One of my favorite documentaries is Fantastic Fungi.
