Aug 8
MBurke
MBurke , Posted on SUPPORT NETWORK Blog

HeartWise: Lessons Learned from a Twenty-Plus Year Heart Disease Survivor

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My name is Michelle Burke, and I am a Heart-Disease Survivor.

21 years ago this month, I was diagnosed with Heart Disease. Specifically, Dilated Cardiomyopathy, with frequent runs of Ventricular Tachycardia.

This diagnosis means my heart is large, stretched out and rather floppy. Because of this, my heartbeats are irregular, and they produce an inefficient rhythm that is very fast, and if sustained, becomes deadly.

When the doctor called me one night while we were having dinner and told me that my heart was in “terrible shape” and asked me to be at the hospital and to “pack to stay a while,” I had no idea what my future held, or if I even had a future. Well, the future is now, and thankfully, 21 years later, I am here to tell the story.

The immediate result of this diagnosis was a miserable 10-day hospital stay, multiple painful surgeries, and the placement of a large defibrillator in my chest cavity. The longer-term result was an unexpected meeting with my mortality, a change in my outlook, an improvement in my health-related choices, and a new sisterhood with other heart-disease survivors.  

I invite you to follow my heart journey from symptoms, to diagnosis, to treatment, to living with heart disease and then to finally, living well with heart disease. I have learned some things the hard way, some things from heart-sisters who had traveled this road before me, some things by digging into the research of The American Heart Association, and some things by the grace of God.

Join me, please comment, and let's live a full and heart-healthy life together.

So let’s begin where it all started.

My Symptoms

I was 32- year-old mom to a nursing nine-month-old baby, an energetic three-year-old, and an inquisitive 5-year-old. After the baby was born, I felt tired. Not just tired. Barely making it tired. I would walk up the steps and lay down on the landing to catch my breath. When I picked up my kids, I would have to sit down to hold them.

My husband and I were, of course, busy with the kids to say the least, but I knew the tiredness that I felt every minute of every day was not typical. I would see other moms with young kids, and I knew deep inside that the stamina and weariness I experienced was different from that of my peers.

I dragged my tired self to several doctors to report this and ask them to fix me, and they told me that when my children grew up, I wouldn’t be tired anymore. When I said to them that my  younger sister, Shari, had died ten years earlier because of a heart problem, they dismissed it as an anomaly and explained that “young women don’t often experience heart problems.” I didn’t believe that was sound logic, but I was too exhausted to argue.

So, even though I knew my symptoms were real and that I was not well, and even though I knew my family history was one with heart disease-- I decided to stop pursuing my health issues. I was busy with my young family, and I thought the right thing to do was to focus on them. So I tried my best to ignore my symptoms.

One day I was sitting in church when I quickly passed out. I didn’t fall down, but I lost vision, and my head bobbed before I regained full consciousness. My husband noticed this event and asked me if I was okay. I told him that I had not eaten breakfast, so he went to the back of the room and brought me a snack. I felt better after I ate, so we dismissed it as hunger. Later, a friend asked me if I had been feeling okay and urged me to see a doctor.

I didn’t do it. Been there, done that. 

The next week at church my friend asked me if I had indeed gone to see a doctor. I explained I had previously been to several doctors and they all said I was okay. She strongly encouraged me to try one more time.

Finally, on Friday of the second week, I called a new doctor. On Sunday, my friend told me she had prayed every day that week I that I would heed her advice.  

Months later (the results of the tests were lost and then found) while we were having a family dinner,  my doctor called. I now knew why I was tired.

I was a heart-disease patient.

Lessons Learned:

1.    Must always listen to my body

2.    Can’t stop looking until I find a doctor who takes symptoms and my family history seriously

3.    To truly take care of my family, I must take care of myself first

Tell me: 
How did you know you had heart disease? What did you learn as you experienced symptoms? Please comment/share as we walk together to continue to build full,  heart-healthy lives.

NEXT: The Diagnosis

 

  • MBurke
    MBurke,

    Friends,

     I have added Part 2 to Homepage,  but for those who found this entry separately, I will add it here, too:

    Part 2: The Diagnosis

    The morning I left my babies and headed to the hospital is a blur. I don’t remember much about that morning, but I know that I  knew my sweet sister Shari died at 19 years of age from a heart condition, I knew that my heart was in “terrible shape” and I knew I was to pack to “stay a while” and I knew that I might need surgery.

    What I didn’t know was that I would have to abruptly stop nursing, I would be admitted to the cardiac floor for 10 days,  I would need multiple electric shocks, two surgeries, receive multiple tests, and ultimately have an AICD implanted, all the while having recurring migraine.... and then I left the hospital with strep throat! (I was under a little stress!) This was no little get-a-way.

    Emotionally I was shot. I had to wrestle with my mortality and the realization that if I didn’t make it home, my children and husband would be in God’s hands and he would care for them. Physically, I was already in bad shape going in….I had a serious heart condition! And,  I didn’t especially follow heart-healthy guidelines of daily exercise and wholesome eating. My exercise was holding three kids at once while trying to put them down for naps, and my lunch often consisted of the crusts from their peanut butter sandwiches. By the time I got home, I was very thin from the 10 days in the hospital, the tests, the surgery, and the stress. I had a new huge scar on my chest and  I looked and felt awful inside and out. I spent a lot of time crying, but I tried to hide my sadness from others.

    I began to keep a journal where I poured out all my fears, my frustrations, and my hopes. I wrote down my prayers and I was very honest with God about all my feelings. I began to meet with the same friend from church who earlier had encouraged me to see a doctor, and she would hear me out, cry with me, and pray with me. I still cried a lot and didn’t know what the future held, but these steps helped me grieve the loss of my health and begin to find the courage to accept the new and different life that was in front of me. But I still wrestled with fear and worry. Then this happened to really change my perspective:

    Because of my surgeries, I couldn’t drive for three months. One day I put the three kids in the stroller and we walked to a school where they could play on the playground. While I was there, I met a woman who was struggling. I don’t remember the details, but I spent some time talking, listening, and ended up praying with her. I didn’t realize my 5-year old was watching but evidently, she was, because on the way home she said to me, “Mom, isn’t it great that God can still use you even though you have a heart condition?

    Lessons Learned

    1. You are not defined by your diagnosis.

    2. Life is different after you are a diagnosis, but it can still be beautiful. Maybe even more beautiful.

    3. Take care of yourself emotionally, spiritually, and physically. - It is normal to feel sad. I am thankful for my journal and my friend, but looking back, I believe I should have sought professional counseling to help me through the early days. Don’t hesitate to do so.

  • GBeattie
    GBeattie,

    Your story struck a spark with me. I had similar symptoms that seemed minor. Tired, no stamina, breathing issues. Was told I had allergies! Long story short, one night I got very dizzy, vomiting and breathing problems. In emergency room, they thought I was experiencing vertigo. Turned quickly to a pulmonary edima. After several days in hospital and various tests, we were told that my heart had been damaged by the chemotherapy that I had had to battle breast cancer  ten years earlier. I am doing quite well on medication and lifestyle changes but I find it extremely stressful. I feel every little twinge and worry about it. Did you experience such reactions? Do you ever really relax and just enjoy... without the what ifs in the back of your mind? Thanks.

  • MBurke
    MBurke,

    GBeattie

    Yes, I did experience your reactions. Over time, I came to realize that each day was a gift, and I tried to make the most of each moment. I still try to make heart-healthy decisions, exercise, see my doctor, take my meds. But I also try to not let my diagnosis define me. This change didn't come over night but over time. I am praying for your adjustment!

    Blessings,

    Michelle 

  • Gojiberry
    Gojiberry,

    The first paragraph 

    I was 32- year-old mom to a nursing nine-month-old baby, an energetic three-year-old, and an inquisitive 5-year-old. After the baby was born, I felt tired. Not just tired. Barely making it tired. I would walk up the steps and lay down on the landing to catch my breath. When I picked up my kids, I would have to sit down to hold them.

    I could've wrote this about me except I'm 34. I went to the doctors in January to March this year and was finally diagnosed March 26. I was told there's nothing wrong with me until they said I had pneumonia, then called me two days later and said it was my heart. I was sent home and told to wait for a call from the cardiology department. The Dr. also sent me home with packets explaining an enlarged heart and the risks of going untreated. In the packets it talked about the risk of dying from going untreated and seek emergency help right away if you have this problem, so I was not going to wait around for a phone call! I went straight to the E.R. and was admitted right away congestive heart failure. I got all the fluid off of me and have been home for the last four months recovering. My e.f. was down to 15. Just had another echo last week and my e.f. is up to 45! Excited to see how my next echo in September goes! Your story has given me motivation and hope. Prayers for you and your family!

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