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Life & Work with Michelle Burke

Today we’d like to introduce you to Michelle Burke.

Hi Michelle, we’d love for you to start by introducing yourself.
Life can change in a moment. Twenty-four years ago, while I was sitting at my table eating dinner with my husband, my 9-month-old, my 3-year-old, and my 5-year-old, I received a phone call that would not only change my life but save my life.

On June 19, 1997, at about 5 p.m, I was in my kitchen participating in a very messy spaghetti dinner when my phone rang. We let the 1990’s answering machine pick up the call, and when I heard it was my doctor, I ran to intercept the call before she hung up. She got right to the point and said to me, “Michelle, your heart is in terrible condition. Meet me at the hospital tomorrow at 7 am… and be prepared to stay awhile.” She may have said other things. As a matter of fact, I am sure she did, but that is all I heard, and that is all I remember, for my thoughts went immediately to my younger sister.

When I was a senior in college, my sister Shari was a freshman. We had a wonderful time at Mizzou. We would meet on campus to study, eat our meals together at the Tri-delt house, and double date. Well, the year after I graduated, when Shari was a sophomore, I received a phone call from my mother in the middle of the night telling me that Shari had died. I remember that moment clearly. We had known that Shari had some irregular heartbeats, and she was even under the care of a cardiologist. She had several episodes of passing out. But her doctors had assured us that “she was a young woman, and because of that, she would be fine.” We were told that young women don’t have serious heart problems. The year was 1988, and they’re just was not enough information, research, or knowledge by the doctors (or the patients) regarding women and heart disease. At 19 years old, just the time most people’s adult lives are beginning, my sister Shari died. I loved her dearly, and I still miss her every day.

After she died, our entire family had our heart checked. I had tests done, and at the time, I received a clean bill of health. But a few years later, I noticed a change in how I felt. I was a busy, young mom with a brand new nursing baby, an active 2½-year-old, and a curious 4-year-old. I’m a real “baby” person, so I loved those years, but I was so tired all the time. Tired really isn’t strong enough a word, but I didn’t have a better one. My friends in similar situations were tired too, but I knew in my heart there was a difference.

I would walk up the steps and lay down in the nearest bed once I got to the top. I would pick up my baby or my two-year-old and have to sit down because I would become breathless. At naptime, I would fall into a deep sleep, completely exhausted, And everyone was always telling me that I looked tired. I didn’t take that as a compliment!

I went to several doctors, telling them how tired I was and even mentioning that my sister had died of a heart problem, but they assured me it was my season in life, and when my kids got older, I would feel better. Honestly, heart problems weren’t on my radar because even after Shari died, we were told her death from a series of irregular heartbeats was extremely rare, and since my heart initially checked out fine, I had nothing to worry about.

I remember once, holding my baby and looking out the window at all my friends on my cul-de-sac, They were packing up their kids into their minivans for a day at Six-Flags, I had declined their invitation because I knew that there was just no way that I could do something that required so much energy and stamina. Just watching them load up their kids in the vans wore me out!

I was just so TIRED.
I was too tired to eat right.
I was too tired to exercise.
I was too tired to get enough sleep!
I was too tired to follow up with the doctors, even when I knew something just was not right.

And you know what? At the time, I did not understand that the best way for me to take care of those I loved was to take care of myself. I thought I was putting my family first by ignoring my symptoms. I thought I was putting them first by not taking the time to find a doctor who would take my symptoms seriously. I thought I was putting them first by feeding them breakfast but then becoming too busy to eat my breakfast. And I thought I was being a good mom by sacrificing my time to exercise so that I could do other “important” things.

One Sunday, I was sitting in church when I quickly passed out. I reached for my husband Tim and whispered to him what had happened. He was very concerned, but I told him that I hadn’t eaten breakfast that morning, so he brought me a Krispy Kreme doughnut. I felt fine after that, so I dismissed the episode as hunger. (!)

A friend of mine urged me to see a doctor, but I explained that I had spoken to several doctors about my fatigue and everyone said I was healthy. Finally, I decided to try one more time. This doctor listened to my symptoms and asked follow-up questions. She ordered blood work, an EKG, and an echo and had me wear a heart monitor. After the tests, a month went by and I had not heard anything, so I thought that was good news. Then at dinner, I received the phone call saying my results had been lost, and my doctor had just tracked them down. She went on to say my heart was in terrible shape and to meet her at the hospital the next morning.

That’s all I knew. My heart was in terrible shape, I’d be in the hospital for a while, and that my sister died of a heart problem. My husband and I put in a Barney VHS tape to distract the kids, and we sat in the kitchen and cried. Later, I went up to my bedroom and fell on the floor, and prayed. I begged God to let me raise my kids and to let me grow old with my husband. My heart had not felt broken like that, since the death of my sister. The next morning I kissed all my children goodbye and went to the hospital for ten days.

I was diagnosed with dilated cardiomyopathy, bigeminy, PVC’s and VT and I had a defibrillator put in. I had to have the AICD surgery twice. The first time the shocks weren’t strong enough. I had non-stop migraines while I was there, I was engorged from my abrupt stop from breastfeeding, and I had strep throat. One more thing: My chest had burn marks on it and was black and blue from being revived in the OR during the procedure. I cried so much that when the transport people came to take me to different areas for tests and procedures, they would bring Kleenexes.

When I finally got home, I had to hire a babysitter to help me because for three months, I couldn’t lift my baby or any of my children for that matter. In addition, I couldn’t use my left arm or drive. During those days of recovery, I researched everything I could about my heart problem. I learned about the medication, the tests, and the treatment. But, I felt all alone. I was sure I was the only 32-year-old woman in the world struggling with this. I would cry at the doctor’s office, and when I would leave the doctor’s office, I would just cry because the prognosis for dilated cardiomyopathy was not good, and at the time, my doctors could offer me little hope. As a matter of fact, when I asked for my prognosis, they told me that they could not guarantee that I would live five years. Even though I was trying to stay positive, I felt very alone with my heart problem. I asked God to give me hope, and I believe he answered that prayer in several ways.

One way was through individuals in the medical community. I will forever be grateful for my internal medicine doctor, who took my symptoms seriously, tracked down my results when they were lost, and then referred me to the cardiologist and electrophysiologist and I needed. Those days are truly a blur, and I could not have navigated my care without her expertise and professionalism.

One of the doctors she referred me to I called my “My Good News Doctor.” He was honest and stern when he directed me to exercise, eat right, take my medications and rest… but he also rejoiced with me if tests were even a little better and stretched me to plan for the future and enjoy the life I was given! He encouraged me to live each day to the fullest and not be defined by my disease. Another way that prayer was answered was by my involvement in The American Heart Association.

In 2007, a neighbor asked me if I would be willing to share my story at an American Heart Association Go Red for Women Luncheon in St. Louis. This was the first time I had heard of the Go Red for Women movement, and I was very excited to find out more. I learned that Go Red gives women valuable information and connects women to other women who are walking down similar paths.

This was just what I had been looking for! I was now a 10-year survivor, but I still felt very alone in my diagnosis. I spoke at that event, and as I looked out on the crowd, I was so encouraged. For not only did I see other women with heart disease, who were encouraging me, but I was able to offer hope and pathways to healing to other women.

I have continued to stay involved since that time and take these important messages wherever I go: Don’t be afraid to go to the doctor or take the tests you need. Listen to your body. Don’t ignore your symptoms. Make heart-healthy decisions every day.

Go Red for Women has given me good information, good friends, and peace of mind that I do not have to fight this heart disease alone. And it has given me the knowledge, courage, and strength to make some powerful choices.

Some of the choices I make are to: I rest when needed. I exercise 6 times a week. I see my doctors regularly. I listen to my body. I know my limitations. I manage my energy. I strive to eat right. And I stay informed of the latest research on Heart Disease. I live each day to the fullest.

I am thankful for good friends and family who have been there for me during many doctor appointments and surgeries, who have understood my limitations, who have helped me establish a new normal and fulfilling life, and who have prayed with me and for me. And I am also thankful to God. Although this journey has had many ups and downs, he truly answered my specific prayer to let me raise my kids and to let me grow old with my husband.

My children are now 29, 27, and 24. I am also a Mimi to a beautiful little 22-month-old granddaughter. When your baby turns 24 and you are a grandma… your kids are grown up! And when my husband and I look in the mirror each morning… we know the growing old together part is being answered too!

Twenty-four years after my diagnosis. I am still on this heart journey. Every day I feel my limitations, I am aware of my mortality, and I realize each day is a gift. I am thankful for the promise of each new day and the opportunity to live it with those I love.

We all face challenges, but looking back, would you describe it as a relatively smooth road?
No. The uncertainty of knowing if I would live or die, be able to raise my children, or live a purposeful life.

Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
Twelve years after being diagnosed, someone reached out to me and asked me if I would consider working again. I needed (and continue to need) a midday rest, and so I thought this would never be possible. They said that they were willing to give me a flexible schedule, and we could start at just 12 hours a week. Soon I was working 15 hours a week, then 20 hours, then 40. They give me the freedom to take the rest I needed when I needed it. To go to the doctor when I needed to. Soon, I became director of the department. My disability did not define me, and I am thankful for the people and organizations that allowed me to re-enter the workforce and thrive. That was eleven years ago. and I am still working.

What matters most to you?
God had a plan for my life. It wasn’t the plan I had envisioned, but it is a beautiful life. What matters most is living the life he has given me to the fullest, loving well those he has put in my path, and not missing an opportunity he sends.

 Contact Info:

Image Credits
The photos on the beach are by Vacay Wedding Photography. The one of me alone in black was taken by Sydnee Burke

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1 Comment

  1. Sophia Fooskas

    August 16, 2021 at 11:38 pm

    What a beautiful and very touching story of how your life was touched by God’s grace and love. May you and your husband have many more years of life together so you can enjoy your family and grandchildren. Bless you! Love 💘

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