Go Red Luncheon 2020

A survivor can be defined as a person remaining alive after an event in which others have died. Today, along with many others, I am a survivor. After being diagnosed with Dilated Cardiomyopathy in January 2019, I was under the impression that I’d be “smooth sailing” for years to come… that any major life changes would happen in my 50s or 60s, however; in June 2019 I had a defibrillator and pace maker implanted.

So much can happen in a year, and as you saw from my timeline, it was an eventful year. Last year, in March, my geneticist called to tell me I had a DSP gene mutation. The DSP gene is associated with autosomal dominant ARVC and Dilated Cardiomyopathy.

ARVC can be characterized by progressive growing fibro-fatty tissue that replaces the muscular tissue of the heart. This action predisposes ventricular tachycardia and sudden death. ARVC primarily affects the right ventricle; but with time will also involve the left ventricle.

Dilated cardiomyopathy is a cardiac condition causing the left ventricle of the heart to become dilated, weakening the heart muscle and reducing the heart’s ability to pump blood effectively, eventually leading to cardiac arrest.

As my geneticist continued, she said that she highly doubted that both diseases would be present, even though I had the DSP gene. People can have the DSP gene, but end up being asymptomatic….so, she said I could wait to have my cardiac MRI until June. (As that test shows if my heart is beginning to develop fatty tissue or scar tissue)

As June approached, I was feeling awesome! I began running again, continued to wear my compression socks as normal, and was under the impression that I was again, “smooth sailing”. As my 6 month appointment from being diagnosed drew near, I had zero worries. I was a strong mom, a heart warrior, and feeling great! Once at Mayo, and after a full day of testing, I waited longer than expected in my doctor’s office. When the doctor came and asked how I felt, I excitedly informed him that I was feeling great and actually just got done walking the stairs at my hotel. Laughing at my optimism, he unfortunately informed me that my ejection fracture was down to 33%, that I needed a pacemaker and defibrillator implanted asap and possibly a heart transplant if that doesn’t do the trick. I didn’t really know what to say or think, so I just laughed…because surely he was joking. Pacemakers and defibrillators were only awarded to older heart warriors. However, he wasn’t joking, and actually said that he wish I would have had it sooner, because unfortunately my heart was developing scar tissue on my right ventricle and parts of my left.

He explained to me that the heart’s job is to squeeze tightly…transferring blood from my heart, to my toes, all the way up to my head and then back again. Having dilated cardiomyopathy, makes it difficult for my heart to produce a full squeeze… having ARVC replaces healthy heart muscle, to scar tissue minimizing my hearts ability to squeeze…and I have both diseases which creates one problem on top of another, further limiting my heart’s ability to squeeze.

I had been a ticking time bomb for 33 years.

5 days later, after being monitored in the hospital, in case I went into cardiac arrest, I had a shiny new defibrillator and pacemaker…or “mommy’s robot” as my son Henry has named it. Recovery was tough-but probably most difficult for my mom, as a mother’s worry will exceeds any other. Her worry of me going into sudden cardiac arrest created many opportunities for slumber parties, so she could monitor my health. On the bright side, there are a few cool benefits in having my new robot. It has an alarm, to sound if my heart is acting up, an alarm in case the battery needs changing, and an alarm that notifies me if an ICD lead connected to my heart comes out. Myrobot is connected to blue tooth, and some lucky soul is assigned to watch my arrhythmia day in and day out…making sure I’m okay. And the best perk is being able to skip some of the security line at the airport.

Three months post-surgery (Sept 2019), my heart was behaving much better. My ejection fracture (the squeezing function) was up to 45%, heart failure proteins were down, and I had completed my first 5k in 32 minutes.

At my 6th month appointment post-surgery (Jan 2020)…which was also my year appointment from diagnosis, my ejection fracture was fluctuating between 40-43%, and even though my heart failure protein’s are back up…doctors are very optimistic and happy with the function of my heart. A heart transplant has been taken off the table, and actually my doctor, Dr. Omar Abbuezzidine and his colleagues have written a case study on my condition and are speaking all over Europe, educating other doctors on my heart’s success.

About 80% of patients who have ARVC are only diagnosed through autopsy, so again, I consider myself lucky. People often ask how it makes me feel to have such a bad heart…and my response to them is that I have a strong heart. My heart withstood 33 years of intense pumping. I’ve been an athlete my whole life, delivered a child, and still my heart continued to do it’s job making me a survivor… a person remaining alive after an event in which others have died.

So my advice for all of you is to listen to your bodies, treat your body well, love the people around you, and educate others about this story and any other stories you hear so that heart education can spread. The American Heart Association started in New York, in 1915 and consisted of doctors and social workers wanting to discover and share information related to heart disease. Through the 30’s and 40’s the American Heart Association enlisted help of non-medical volunteers to spread education and begin fund raising. It wasn’t until the 1990’s where scientific research findings began to move from laboratories and clinics to doctor’s offices and eventually to the public bringing education about heart disease into households. In 2004, the American Heart Association (AHA) faced a challenge. Cardiovascular disease claimed the lives of nearly 500,000 American women each year, yet women were not paying attention. To dismiss the myths that this was only a man’s disease, and raise awareness of heart disease & stroke being the number one killer of women, the American Heart Association created Go Red For Women designed to empower women to take charge of their heart health. Go Red encourages women’s awareness with heart disease, to save more lives. The movement harnesses energy, passion, and power with the challenge to know the risk for heart disease and take action to reduce their personal risk, providing women with tools they need to lead a heart healthy life. So, that’s the purpose of the GoRed for Women foundation…to spread awareness, spread education, and help more women become survivors. Thank you for your time.