Fear is common for heart disease survivors, but for women diagnosed with atrial fibrillation the fear can be overwhelming.
“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 out doing your normal everyday things, when it strikes?"
Atrial fibrillation, the most common abnormal heart rhythm, causes the upper chambers to quiver, which allows the blood to pool and create clots. The clots can then be launched out and cause a stroke. One third of those diagnosed with atrial fibrillation will have a stroke.
The fear of stroke 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 everyday 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’m 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.”
“What I learned was to never go anywhere without your cellphone,” Mellanie advises. “I could have died right there without my phone. After that, I didn’t 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 a hysterical female,” I tell her that she has two choices -- become very logical and non-emotional in explaining what’s going on or or you can 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.”
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 working.
* 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. Use 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.
For more information visit www.EmbraceYourHeart.com
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