It’s Friday Feb 1, 2019. Do you know what that means? It’s National Go Red for Women Day. February is Heart Month. As in heart disease, not Valentines Day which is a made up holiday. The first Friday in February is Women’s Heart Disease Day. Wearing red shows your support and awareness of women’s heart issues. As a woman with congential heart disease (CHD) I’m always trying to get people to be aware of this.
Did you know that 1 in 4 women will be diagnosed with some sort of heart disease this year? Did you know that one 1 in 8 women will be diagnosed with breast cancer this year? It blows my mind that people pay so much more attention to breast cancer than heart disease. Cancer is horrible and ugly, but people talk about it and raise awareness for it on a much larger scale. Heart disease- especially women’s heart disease- doesn’t get nearly enough awareness. Believe me, I’m out to change that. And I will because I’m a loudmouth.
When we think of heart disease, we think of an older man, overweight, with a cigarette in one hand and a drink in the other, right? While that stereotype does exist, women are getting heart disease in record numbers. With all the data out there, ignorance is a choice. And while it’s true that most women don’t get heart issues until 40 years of age or later, there are some of us – me included- who were born with a congential heart defect (CHD). This means that our hearts were formed incorrectly before we were even born. While I can’t speak for women who get heart disease later in life, I can tell you what it’s like to live with a serious heart problem. Here’s a few truthbombs for you:
- All CHD is different. I couldn’t even begin to name them all, so I’ll just tell you about mine. I have Transposition of the Great Arteries (TGA). This means that my pulmonary artery and my Aorta are backwards on my heart. Now, they can do surgery to correct this but way back in ye olden days of 1980, they couldn’t. My heart has a maze in it and literally runs backwards. It works, but it’s not cured because…
- There is no cure. Surgery is not a cure. A pacemaker is not a cure. When people hear I have a pacemaker, they think it’s a big deal. Actually, my pacemaker is the least of my surgeries. Having TGA means you get to have your chest cut/cracked open at a very young age. Super fun.
- We look normal. When someone gets cancer, they may lose their hair due to chemotherapy and people can see the struggle. CHD kids and adults generally look like anyone else except the big ol’ zipper scar across our chests or a pacemaker scar on our left side. Many of us have tiny scars all over our bodies from where tubes were stuck in us. I wear tank tops and bikinis and forget about it. If you look closely, you’ll see them. Also, I have a large ribcage for my frame. (This has been a joke among me and my friends for years. A few years ago, a Victoria’s Secret sales lady tried telling me I could wear a 32B bra. I looked at her and said, “Yeah, this ribcage is AT LEAST a 36 around.” My husband says he’s going to form Large Ribcage Awareness for me.) My ribs also don’t set right as my left side sets more forward than my right. Also, my left collarbone is higher. Oh- and my boobs never grew much. I think insurance should pay for me to get that done but apparently, healthcare doesn’t work that way. Maybe I should take that up with the President…
- We can’t take certain medicines. When you get a cold, you take a decongestant and move on with your day, right? Not if you have heart disease. You can’t take any decongestants because they can mess with your heart rate. So when I get a cold, I just get to suffer. Because we can’t take certain medicines to treat symptoms, we often get sicker than others. If I get any sort of upper respiratory infection, I’m out for a couple of days. My body doesn’t heal as fast as a normal body would and my immune system isn’t as great as normal immune systems. If you have any flu like symptoms, know that I will run away from you as fast as I can. And I hate to run so just don’t come near me. I get migraines but can’t take migraine medication so when I get one, my whole world shuts down for 4-24 hours. If I have any type of surgery, I can only have certain anesthesiology. If my surgery is at the Mayo Clinic, my cardiologist picks out the anesthesiologist to work on me. If I am not at the Mayo, I have to have the doctor call my cardiologist.
- We have to be our own advocates. So many doctors don’t understand the complicity of congenital heart disease. My specialized cardiologist reminds me all the time that I have to push for my own healthcare. A few years ago, I was feeling crappy- sore throat, achy, stuffy, headache- the crud that was going around. I went to a walk in clinic on my lunch hour as I worked out of town. I figured they would check my vitals, do an X ray, give me some steroids and order me to go home as that’s what my doctor always did. The doctor came into the room and WITHOUT EXAMINING ME told me I had sinus infection and to use a nasal spray. I argued with her and said, ” I don’t mean to tell you how to do your job, but I have TGA. I usually get a steroid for this sickness.” She told me I was fine. Two nights later, I woke up with my throat swollen shut and my chest hurting. I went to my family doctor and he took one look at my vitals (my temp was at 100) and said, “Girl, you have some sort of influenza. You’re getting the flu test and if you have Influenza A or B, you’re getting admitted to the hospital immediately.” I nearly broke down in tears because we were supposed to leave on vacation the next day but I felt to crappy to argue. My test was negative for A or B, so he gave me the correct medicine and let me go. He couldn’t believe they had just assumed I had sinus infection and sent me home. That’s just one example of me having to be my own advocate.
- More people have heart disease than you realize. Jimmy Kimmel raised awareness when he delivered his monologue on his show about his newborn’s open heart surgery. Fred Hoiberg (former Iowa State basketball coach) has heart valve issues and has a pacemaker. He doctors at the Mayo Clinic so I’m convinced were going to meet someday. It’s my dream, don’t knock it!
- We don’t get a choice about a healthy lifestyle. If you have heart disease, you HAVE to take care of yourself. I never got a choice about it. I have to stay in shape, stay within a healthy weight range and eat healthy. I know a lot of people think I do it for vanity, but that’s on the bottom of the list. Any extra weight makes it harder for my heart. I need to continue to exercise so that my lung capacity and heart pumping abilities function better. I don’t drink much because alcohol can mess with your heart and add extra fluff to your body. I think it goes without saying that I don’t smoke or do drugs. When someone complains to me about their lack of exercise habits or how hard it is to eat healthy, I usually roll my eyes and tell them to get over it.
- We have to work harder to stay in shape. Our hearts are not functioning at a normal rate, so exercise is difficult. When I’m in a kickboxing class, I’m working harder than some because my heart rate doesn’t naturally go that high. My metabolism doesn’t run as high as others so I really have to eat healthy to maintain a decent weight.
- We may not be able to have children. With the advancements in the medical field, more and more women are able to have babies. I am not. It’s something that I’ve struggled with but made peace with it.
- We may not have a lot of sympathy or empathy toward small health issues. If you know someone with heart disease, they’ve been through serious trauma and been to hell and back. When you’re complaining about your stuffed nose or a minor routine surgery, please remember who you are complaining to. With the trauma I’ve dealt with, I tend to give some tough love. When someone complained to me about their child having their tonsils out, I said, ” This is minor. This is not cancer and they are not getting their chest cracked open. This is an inconvenience but it is short lived.” Maybe that sounds harsh, but it’s the way we think.
Do I ever get angry about having heart disease? Not really. It’s just a part of who I am and my parents raised me with awareness of my issues. I was only 4 days old when I had my first open heart surgery and the doctors told my parents I would probably not have much energy and be lethargic. According to my dad, I had enough energy for two kids and drove him crazy. My parents let me do any physical activity I wanted and I learned to listen to my body if I got short of breath or tired. I really didn’t realize how serious my heart issues were until I was a teenager. Most days, I don’t even think about it. It has shaped my personality in a big way- I’m tough, stubborn, and generally don’t quit until I get what I want. I am extremely serious about fitness and nutrition in a way that most people do not understand. A few years ago, a guy I knew with the same heart problem passed away. He didn’t take care of himself, became an alcoholic, and eventually his health issues caused him to die at about age 30. We were the same age- diagnosed at the same time. I know people look at me like I’m crazy when I turn down a cocktail (and I do like a cocktail every now and then!) or when I turn down junk food, but I really need to be running at my best in order to function like a normal person. I know some younger kids who have varying CHD issues but don’t know a lot that are my age. The only time it’s ok to be the oldest person in the room is when you’re in a room with a bunch of other CHD people!
I hope you’re all wearing your red today in support of February Heart Month and Go Red for Women. CHD Awareness week is Feb 7-14 so spread the word! If you know someone with heart disease or CHD, go give them a hug. Or just hug someone else around you. Hugs are nice 🙂
*** Please consider giving to the American Heart Association, Mayo Clinic, or any other heart hospital or association you deem worthy. The more research we can get done, the closer we will be to finding a cure!***