“You are scared, your family is scared, and you just don’t know if something else is going to happen,” explains Mellanie True Hills, founder of the American Foundation for Women’s Health and the atrial fibrillation patient resource StopAfib.org.
For most people who are diagnosed with heart disease the fear subsides as the patients become stronger.
“That’s very reassuring for women with heart disease,” shares Mellanie, who was diagnosed with atrial fibrillation after having a previous heart condition, “but for most afib patients that’s not the case as we never know when afib will strike. Will you be in line at the grocery store or out doing your normal everyday things, when it strikes?”
Atrial fibrillation, the most common abnormal heart rhythm, causes the upper chambers quiver, which allows the blood to pool and create clots. The clots can then be launched out to the body and cause a stroke. One third of those diagnosed with atrial fibrillation will have a stroke.
The fear of stoke forces many afib patients to stop activities they love, such as skiing, snowmobiling and flying, because they can’t risk having a stroke while doing them. However, even normal every-day activities, such as walking the dog, can lead to a dangerous situation.
“There I was, a few weeks after being diagnosed with afib, out walking our dog,” shares Mellanie. “I was a half mile or so from home when my exercise heart rate monitor went screaming up from my normal heart rate to about 300. I was freaking out, thinking I was going to pass out right there.”
“Fortunately I had my cell phone, so I called my husband. My heart was racing and felt like it was going to jump out of my chest. The two minutes it took for him to come get me felt like at least 10 minutes.”
“I learned to never go anywhere without your cellphone,” Mellanie advises. “I could have died right there without my phone. After that, I didn’t even go to the mailbox without it. Afib is frightening, and you are afraid to go anywhere by yourself. You are paralyzed and scared. It’s not just you; it’s your family as well.”
Afib has a huge impact on both the patient and the family, but doctors may not understand the emotional toll that afib patients pay. “We women tend to open up more about our feelings and what our condition is doing to us,” Mellanie elaborates, “doctors are often left-brained, and thus not as emotional, so they don’t always know how to deal with our emotion. When I hear a woman say, “my doctor says I’m just a hysterical female,” I tell her that she has two choices — become very logical and non-emotional in explaining what’s going on or find another doctor.”
Atrial fibrillation is a difficult condition to manage since symptoms, triggers and the success of treatments vary so much between individuals.
“We are ‘experiments of one’ because what works for one patient may not work for another,” says Mellanie.
“If your doctor says you are just an emotional female and is not really taking you seriously, can your doctor really give you the best treatment? It has to be a partnership. If you don’t have mutual respect and mutual communication, you will not get the kind of treatment you need.”
Atrial fibrillation is a difficult condition to manage since symptoms, triggers and the success of treatments vary so much between individuals. “We are ‘experiments of one’ because what works for one patient may not work for another,” says Mellanie.
Working with your doctor to learn to manage your atrial fibrillation and your risk of stroke will ease the impact on you and your family.
Tips for managing your afib
- Work with your doctor to get your atrial fibrillation under control. The best way to prevent stroke is to prevent afib episodes. Be aware of your triggers and discuss your treatment options with your doctor. Seek the advice of an electrophysiologist, who specializes in rhythm disorders, if your treatment plan isn’t controlling afib.
- Be consistent in taking your medication. Use a pill case to keep track, and, if necessary, an alarm to stay on schedule.
- Maintain a consistent Coumadin level. Monitor your diet and medications to maintain the proper blood consistency to prevent clots from forming. Discuss with your doctor if home INR testing is an option.
Tips for managing your fear
- Understand the signs of stroke and have a plan to get immediate help.
- Carry a cell phone — always and everywhere. Have family and health care providers on speed dial and as “In Case of Emergency” numbers (ICE1, ICE2, etc.).
- Talk to your family and friends about what to do in an emergency situation.
- Carry an emergency medical information card.
- Focus on what you can do and don’t dwell on what you can’t.
Stroke symptoms arise suddenly and according to the American Stroke Association include:
- Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
- Sudden confusion, trouble speaking or understanding
- Sudden trouble seeing in one or both eyes
- Sudden trouble walking, dizziness, loss of balance or coordination
- Sudden, severe headache with no known cause
Stroke is a medical emergency. If you have any of these symptoms, dial 911 immediately.
The Patient’s Perspective is a series of recorded teleconferences and articles presented by the Embrace Your Heart Wellness Initiative and hosted by Eliz Greene. Each teleconference focuses on a specific
challenge facing women with heart disease. For more information visit www.EmbraceYourHeart.com
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Eliz Greene is the Busy Woman’s Guide to a Health. Drawing on her experience surviving a massive heart attack while seven-months pregnant with twins, struggling to lose the 80 pounds gained during her pregnancy, and her background as an adaptive movement specialist, Eliz developed simple strategies and tips to help other busy women be more active, eat better and manage your stress.
As the Director of the Embrace Your Heart Wellness Initiative, Eliz travels the country energizing and inspiring audiences in keynotes and workshops on women’s heart health. She writes one of the top 100 health and wellness blogs. Find more at www.EmbraceYourHeart.com