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Share Your Story: Cassandra Michels and Clarissa Michels-Naset

by Jason H. on Monday, October 7, 2013

Cassandra Michels and Clarissa Michels-Naset Wisconsin

Our names are Cassandra Michels and Clarissa Michels-Naset. We are twin sisters and hope to bring awareness to the fact that heart disease can affect anyone of any age, gender, and physical condition.

Cassandra:  Growing up on a farm Clarissa and I were physically active, but only to a certain extent.  Symptoms of pressure in the chest, fatigue, and shortness of breath impacted our quality of life. These symptoms were thought to be caused by asthma. However years went by and we never seemed to outgrow our asthma. In school, running during recess or gym class was a nightmare for us, feeling ashamed and embarrassed on top of gasping for air and trying not to black out. There was also the constant fatigue. It got so bad that attending college while holding a job seemed impossible. We felt as if we were young women on the outside with bodies aging before our time. You get to a point in life where you get so tired of feeling beaten down all the time that you start to fight back. We decided to do everything in our power to feel better. Up to this point we had the lifestyle of most women our age. So with a little education and maturing that came naturally with age, we lived healthier and felt the best we had in our lives. Which brings me to a turning point. This is where Clarissa's story begins.

Clarissa:  I was 25, just married a week earlier, and life had never been better. It was a Sunday evening and I had felt fine all day until all of a sudden I had felt dizzy, like I could pass out at any moment. I even blacked out for a bit. In an instant I became weak and exhausted only getting up to vomit. After 3 days of suffering from what I though was food poisoning, I finally decided something wasn't right and so my husband drove me to urgent care. I told the nurse I thought I was suffering from food poisoning but something just didn't feel right in my chest. She proceeded to take my vital signs and as she finished, the look on her face was as though she had seen a ghost. My blood pressure was 60/40 and my heart rate was 40 beats per minute. I was rushed by ambulance to the hospital where the mystery began. What caused a young, healthy, 25 year old woman's heart to fail? The doctors told me that I had 3rd degree heart block. The cause was unknown so the tests continued from there. After 5 days with a low heart rate and pulse, the tests were not giving any answers. On the 5th day my heart rate had dropped to a deadly 20 beats per minute and my pulse was still disturbingly low. I will never forget that feeling. I was slowly dying. Doctors knew they couldn't wait for answers to what caused the heart failure and had to put in a permanent pacemaker. A day after the pacemaker was implanted, I was released from the hospital. Grateful to be able to function somewhat normally again, I still felt scared, confused and fragile. What was life going to become living with heart failure, feeling like my body could give up at any moment. All I could do was try and live as normal a life as possible with this dark cloud hanging over me. As I stood in the rain, Cassandra's storm was rolling in.

Cassandra:  Months passed and questions still were unanswered. I was laying on the couch one Saturday morning after my daily workout when I noticed my chest felt abnormally uncomfortable. So, knowing Clarissa’s situation, I decided that I better go see a doctor. After arriving to the hospital, I was quickly hooked up to a heart monitor along with an EKG. The doctors believed I was going into heart failure. I was air-lifted to Luther Mayo in Eau Claire where I was quickly hooked up to a number of monitors and examined. After a couple days of observations and more tests, the doctors decided to treat my condition with medication and lifestyle changes. However I was told a pacemaker would be needed in the future. I was then scheduled a visit to Mayo Clinic in Rochester Minnesota for further tests, labs and monitoring. After my stay there, results from a genetic test showed a mutation in the desmin gene that affected muscle tissue including the heart. I remember receiving the phone call feeling overwhelmed. I wrote down as much information as I could from that phone conversation, and the when I hung up the phone I went to the internet to learn as much as I could about my recent diagnosis. I learned that this genetic mutation, termed desminopathy was causing damage to the walls of my heart causing hypertrophic cardiomyopathy. The American Heart Association website helped make sense of these ever present words in my life. The American Heart Association website was where I spent a lot of time reading others stories, learning how to cope and where to go from here. This new information was very emotional for Clarissa and I, making sense of why we felt the way we did growing up and why we feel the way we do now. Months passed and I did everything I could to the best of my ability to live a heart healthy life style and follow doctor’s orders. However one morning I woke up and knew my heart was tired. I drove myself to the ER. Within hours an emergent pacemaker was implanted temporarily until a permanent pacemaker could be surgically implanted let that day.

Clarissa:  Around the same time with all that was going on with Cassandra's health, I was also sent to Mayo Clinic in Rochester, Minnesota to get similar tests done and to see a few specialists. The tests came up with the same diagnosis as Cassandra, desminopathy. The diagnosis meant an answer to my heart failure, but also led to many more questions. What will my quality of life be like with this disorder? Will all my other muscles fail? What can be done to help cope with this disorder? Life was never the same. Every day there are struggles, some worse than others, feeling weak, tired and stiff. Everyday tasks have grown more difficult such as climbing stairs, taking deep breaths and even swallowing. However, it is also an everyday reminder of the importance to make the best out of the time we have here together. The American Heart Association has been an important tool to help us do whatever we can to live as best we can with heart disease. It is a place to go for resources, answers, and support. Heart disease is not always the result of old age or poor life choices, but no matter what the cause it is serious. Never take life or your health for granted because life can change in an instant. As a quote from the very wise Buddha reads, "To keep the body in good health is a duty, otherwise we shall not be able to keep our minds strong and clear." Thank you all for listening to our story and remember to keep your hearts healthy with the help of The American Heart Association. 

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