For those that do not know this about me, I have heart disease. This is in addition to Systemic Lupus, Fibromyalgia, and a host of other autoimmune issues. February is an important month, as it is American Heart Month, and it contains a day for awareness for women’s heart disease – National Wear Red Day.
On May 24, 2011 I was diagnosed with Cardiomyopathy/Left Ventricular Hypertrophy, idiopathic. I was 43 years old and being told that I had heart disease, and the damage was permanent. I went on meds to lower my blood pressure, and regulate my heart rate to both slow my pulse and stop the recurring palpitations. I also decided that the joint pain and fatigue of Lupus, and the muscle and nerve pain of Fibromyalgia, were not impossible to face in the light of the worse scenario at hand… and I started walking again for exercise. In the beginning, it was all I could manage to walk to the corner of my block and back. As that became easier, I went to the corner and back more and more times, and then started walking farther, and farther. I regained some control of my life.
February 3 was Wear Red Day in 2012, and the day of my first shoulder surgery. I wore the red hat that is in my Facebook profile pics that shows a beauty of a malar rash. My mother wore red that day too (my parents took me to my surgeries), and I remember having a giggle at one of the nurse’s scarlet red scrub caps. I had to be cleared for the surgeries with a stress test before that day, and there was much discussion about whether I was ready, and if it was safe, so this was a big deal. Thanks to the fantastic care at Redlands Community, and so many Loma Linda professionals, I felt safe and happy to be taken care of by such amazing people. All went well.
One year after being given what felt like devastating news, I had a second stress test done. Normal ejection fraction of that ventricle is 55%, and mine had been down to 45%. An athletic individual (which I used to be) can be in the range of 60-65%. I was given a very small chance of possibly some improvement over time, but they were not really encouraging. At that one year mark however, I was back up to 55%. I may be stuck with a beta blocker med for the rest of my life, but I have a life. It’s no joke, because a number of people do just simply drop dead in the middle of an arrhythmia with this condition. I had complained of symptoms for 2 years before I got a Dr with enough brain cells to say we need to run tests. The risks are still present for me, even treated, but GREATLY reduced. I’m always aware of it. I just won’t let it limit how I live my life.
I absolutely mean to be blunt about this. I speak up on this topic, especially for women, because we don’t have the same symptoms as men do, ladies. If you have symptoms that you can’t identify and explain readily, get your butt to the Dr and find out what it is! All I knew was I was tired, and felt like I had a weight on my chest a lot of the time. I felt like I wasn’t getting enough oxygen, even though my breathing was fine. I felt better lying down, so it was definitely not respiratory. The palpitations are hereditary in my family, and normally are benign, so please don’t be fooled if that’s you too. Things can change. If you have them, get tested and rule anything structural out. Read up on the signs and symptoms for WOMEN, and commit them to memory. Don’t be the one that sits in your house wondering if you should call someone if you’re in distress. Let a professional tell you if you are okay or not. This is a “better safe than sorry” topic. Take care of you – you only get one shot at that in life, and no one can do it for you.
Heart disease is not only the number one killer of women in the U.S. – Lupus patients are at an extremely high risk for it.
Wear something red this Friday, February 7 with me, and help spread awareness.