Aug 8
MBurke
MBurke , Posted on SUPPORT NETWORK Blog

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

Story image

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

 

  • yarn007
    yarn007,

    I did not know I had heart disease.   Got Influenza (3/2016).  Yes, I had the flu shot.  Was starting to recover then I was back to not feeling great.   Was out 8 days due to the Influenza.   Went back to work for two days then had my normal 2 days off.   On my day off I could just feel my breast bone (nothing more than that).   Went to a late night movie with my husband.   Couldn't sleep all night thought I might be getting something else (headache, and ear pain).   Told husband to take me into ER since I had to work on the next day (Easter).   Er did a EKG as part of their protocol.   It was a bit off.   They did the troponin (blood test).   My troponin was elevated and indicated I was having a heart attack.   By this point my head hurt so bad I couldn't process anything let alone what someone was telling me.   Next thing you know they are taking me for a "test" and off to the Cath Lab I went.   Next thing you know they are putting a stent in my LAD.   It was until 3 hours later that I finally asked the nurse...."so, like did I have a heart attack????".   To which she replied "oh, honey you definitely had a heart attack".   That is how I discovered I had heart disease.   Mind you up until this point I had never had surgery in my life or ever spent the night in a hospital short of birth.   Needless to say it was a very traumatic experience.   In the end medical people figured I was sooo sick with the Influenza and that it put so much pressure on my heart that it caused a heart attack.   Turns out my LAD was 80% blocked and that getting the Influenza saved my life otherwise I never would have known about the blockage.

    What did I learn from the experience?   Trust your gut.   If something doesn't feel right to you.  GO IN AND GET IT CHECKED.   When people say to me... "I don't know if I should go in or not".    This is what I say "If you would stay up tonight with worry"...GO IN.    What happened to me could have easily been missed had I not followed my gut and gone in.   Did I ever think I was having a heart attack?  No, but boy was I surprised.   What I did learn later on from a paramedic is that my heart attack symptoms where those of a "Diabetic Woman" having a heart attack.  

    Thank you for sharing your story.   Will be interested to read the rest of it.

  • AHAASAKatie
    AHAASAKatie,

    Thank you so much for sharing this wonderful, inspirational great story! Best Katie 

  • marshamd59
    marshamd59,

    Hi Michelle,

    Thanks so much for sharing your story. I have been there with doctors who don't listen. I've also learned the hard way that we have to know our bodies and when we know something is wrong we have to be a bit more pushy. It's hard for me too, but we have to follow our instincts. I'm so glad your friend was there for you and pushed you to keep looking for answers. My heart disease began as I finished up breast cancer treatment. I did the same thing, went to my Primary Care physician because I couldn't walk from my desk to the restroom without being completely out of breath and I woke up one night feeling like there was a knife in my chest. I was also retaining water BIG time. They did a chest X-ray and said I didn't have Pneumonia and it was probably just a virus. I was back at the doctor within a couple of days. They did another chest X-ray and while I was waiting I started thinking maybe it's my heart. I knew the cancer treatments can cause damage and so when the doctor came back it I mentioned it to him and he said, you know your heart does look a bit enlarged. So he ordered an ECHO and that told the story. Anyway, that was 13 years ago. Last year was a rough one, but I'm doing better after several procedures. I went to my appointment yesterday and the PA makes the comment I'm in End Stage CHF.  What?!  Why would she say that. It kind of threw me for a bit of a loop. My doctor has never used those words. That's why when I saw your blog today it made my heart sing! I love that you're into this 21 years! I know it's in the Lord's hands. I just have to live my life the best way I can and let the future take care of itself. Thanks again for sharing and I look forward to hearing more of your story.

    Your sista in heart disease!

    Michelle

    P.S. You have a beautiful family.

  • yarn007
    yarn007,

    Great post Michelle.

  • MBurke
    MBurke,

    yarn007- Thank you for your kind words and sharing your story. I am so thankful that your "followed your gut." Your story and your life is an inspiration! 

    My best,

    Michelle 

     

  • MBurke
    MBurke,

    marshamd59  ,

    Thank you so much for your comments and for telling your story.  My friend, you ARE  a survivor! Breast cancer and heart disease! I know it has not been easy, and I celebrate with you. 

    My heart sank because of the comment the PA said to you. Please do know that I have had many similar words said to me over my 21 years of walking/living/treating heart disease. I know they have meant no harm, but yet, it does as you say, "throw you for a loop!"  Someone even told me when I was diagnosed that I didn't have 5 years left to live. Obviously, they were a little off......

    You are right! Your life is in the Lord's hands-- as is mine. We cannot see the future (nor can the PA) but we can pray for wisdom in making correct medical decisions, strength for each day, and peace that passes understanding. 

    I am praying for you, today. 

    Your heart sister,

    Michelle 

  • Ercel
    Ercel,

    So inspirational to hear 21 years and going strong!  I’m hopeful for a similar story to tell with my DCM. Still shell-shocked after an ER visit and diagnosis last week. Fortunately, coping skills I’ve learned with rheumatoid arthritis have helped deal with the shock. Best of all, I’m still here!  Could have been worse!

    I have a heart catheterization this Friday, and in the interim I’m staying as active as able. 1.4 miles walked so far today, and after lunch I hope to make it a little further.  Rest is great, too, but my idle mind begins to crowd out faith with doubt. It is beyond my meditative, prayer and relaxation abilities to fully deal with all the emotions right now. 

    My fervent desire is that I get to see my daughters grow up, but as a close friend told me, they are in the Lord’s hands just like the rest of us are and always will be. 

    Thanks so much for sharing your story, Michelle. I look forward to reading more. Until then, best wishes to all!

     

  • Vivi2711
    Vivi2711,

    We are inspired by your story. It sparkles a ray of faith & hope to people like me. 

    During the first week of May 2018, I felt short of breadth. Since I was prone to asthma, Immediately started taking OTC medications for bronchitis which yielded no relief. Three days passed and I was continuing my activities of traveling 140 kms by train from my home to office with the same condition. Visits to two doctors resulted in increase of antibiotics and pulmonary syrup to ease out my lungs. The next day  visit to another doctor yielded an advice to consult a cardiologist which was done promptly. My cardiologist diagnosed as I am suffering from dilated cardiomyopathy comprising of  severe left ventricular dysfunction with an ejection fraction of 39%. Immediately I was started with app medications. My shortness of breadth has stopped but I am undergoing extreme fatigue, numbness of hands, loss of appetite, constipation& depression rendering me unable to attend work for the past three months. I was losing hope till I read your story and now feel greatly inspired. Thanks for posting it and we pray before the ALMIGHTY for your well being 

     

  • MBurke
    MBurke,

    Ercel- Thanks for the reply. Believe me, I had many "shell-shocked" emotions, fears, and doubts too! And occasionally they do creep back in a bit. But your friend gave you very a good reminder that we are all (even our children) in the Lords' hands. Meanwhile, stick with your good routine of rest, exercise, and good healthcare. My prayers are with you! 

    Best,

    Michelle 

  • MBurke
    MBurke,

    Dear Vivi2711,

    My heart knows how you feel and I am praying for you! My EF was 35 when I was diagnosed and I had most of the symptoms you are experiencing. Your depression is very normal and real, and I encourage you to talk to your doctor about it so that you may receive some help during this time of adjusting to your diagnosis. It is a lot to take in! I am glad you were diagnosed, are receiving good treatment, and are seeing progress in your symptoms. Rejoicing in this and praying for continued good reports! 

    Blessings,

    Michelle 

dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active
dark overlay when lightbox active