Meet Mary Jean
Mary Jean lives with a type of hereditary heart condition known as hypertrophic cardiomyopathy (HCM), that often keeps her from doing the things she loves. Despite her condition, she is determined to live a normal life and take in all the richness life has to offer. Hear her inspirational story and learn what motivates her resilience.
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Video Transcript
[Mark]: 00:00:02 |
We are going to stop her heart and restart it. It was beating so fast, that they had to stop it to get back into a normal rhythm. Everybody steps back from the table. Her whole body lifted up off the bed and her heart stopped. And you’re waiting for that beep. Okay, where’s the beep? And then, it went back. And it’s like, okay. And it was back in rhythm. |
[Mary Jean]: 00:00:45 |
I have a hereditary heart condition. Most people have not heard of it. It’s a condition that a lot of times athletes you’ll hear about that drop dead suddenly. So I consider our family fortunate that we know we have it. Cause usually they don’t know people have it until they drop dead suddenly. I am the youngest of 15 siblings. I have seven older brothers and seven older sisters. Seven of us have this hereditary heart condition. |
[Mary Jean]: 00:01:13 |
When I was first diagnosed I was 22. I was active and I did a lot of things and I had to stop. But then there was a lot of years since I was diagnosed until I had my first episode, real episode, that I felt good and I did things. And so I never thought, I guess you think you’re invincible. And I almost could pretend I didn’t have this condition. Fortunately, I have a very good caregiver who recognizes the different symptoms I have, and he can tell what I need at that time. |
[Mark]: 00:01:44 |
I kind of got into this…Okay she’s dehydrated. I know what to do. Congestive heart failure, I know what to do. Oh, AFib. Okay, let’s go. So it’s almost like I know the routine and I’m going through these things, but you just do it. You just get used to it. It becomes who you are and what relationship you’re in. It’s just the way of life. |
[Mary Jean]: 00:02:06 |
I try to do everything to stay healthy and to do the right things. And my heart has a different plan for me, like out of the blue. And I get frustrated with it because I feel good. I do something and then boom, I end up on the floor or I end up in the ER. I mean I’m healthy. I want to do things, but the darn heart doesn’t want me to do things. And so I get frustrated. And then for like I said, lots of times I would say to my kids, don’t tell me what…I’m fine. I can do this. And then I’ll have an episode. Or they’ll remind me of my episode. No, it doesn’t feel good at all. |
[Maureen]: 00:02:51 |
I, fortunately got to know her at a young age, as a very active mother. But I also didn’t get to experience her when she did play sports. I knew that I was tested as a baby for it and it had shown that I did carry the gene. I didn’t start noticing any symptoms of it until I was in first grade when my mom had an episode that I was present for. All of a sudden, I noticed her eyes started to roll into the back of her head and she just fell backwards and was unresponsive. Having so many family members that have this heart condition, my mother, my grandmother, many extended family members. It is emotional when I think about like what my heart is going to look like. |
[Mary Jean]: 00:03:43 |
It’s overwhelming when you first hear this diagnosis. But you can have a normal life. You can. There’s scientists and doctors who are discovering great things and can help you. |
[Mark]: 00:03:56 |
So our story is one of endurance, pain at times…worry, anxiety, but hope. |
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You can have a normal life. There are scientists and doctors who are discovering great things and can help you.
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