"Takotsubo cardiomyopathy," the Dr. said when I asked for a diagnosis. English please. The Dr. went on to explain, it's better known as Broken Heart Syndrome. When I heard those words I immediately knew my heart broke when I was 17 years old and in a fatal car crash.
It was somewhat of a relief to finally have a name for an illness I believe was misdiagnosed as asthma in1982, and that after a half dozen Drs. with no diagnosis at all.
Every time I've called 911 and rushed to the ER because I couldn't breathe I was treated for asthma. I was laughed at a few times, because no matter how many times I said, "I FEEL like I can't breathe", they would look at my oxygen level and say, "You ARE breathing". One nurse even did a little dance for me.
What they didn't understand was, the oxygen was not being pumped to a portion of my heart. The broken left ventricle. I couldn't make them understand it's not my lungs it's my heart.
I understand in an emergency situation they treat the crisis but couldn't understand why the treatment stopped there. Especially after I had the BHS diagnosis. Bottom line, they couldn't treat it if they didn't know about it.
During a heart attack, heart muscle cells die and release proteins into the bloodstream. Blood tests can measure the amount of these proteins in the bloodstream. Higher than normal levels of these proteins suggest a heart attack. Other than my original crisis and call to 911 in February 2016, EKG, blood work, CT scans, ultrasound and other tests are always normal. That first time, (when I spent time in the Light of God's Presence), they said I had a heart attack but I knew I didn't. The second blood test didn't have the proteins. They were back and forth questioning whether I did or didn't for a couple of days. It was finally decided they had to treat me as though I had a heart attack even if I actually hadn't because there was that one blood test with the bad protein.
I was home for exactly 2 weeks, (February 2016), when I had to call 911 again because I was unable to breathe. Admitted again, different Drs. and finally the Broken Heart Syndrome diagnosis. The Dr. who diagnosed me had only heard of BHS about 2 years before and had never treated a patient who had it. I think no one really knew what to do with me. I took the heart meds and went through cardiac rehab and began to feel better.
November of 16 seasonal allergies cropped up which resulted in asthma and bronchitis. Back to the Dr., I go to begin the on/off prednisone routine that had become my way of life and led me to that moment when I was trying to crawl onto my front porch last Monday.
When I was in the hospital last week, only 2 of my medical team had ever heard of BHS. The ICU Dr. said because BHS is precipitated by a stressor which he determined was asthma, I was not treated for BHS. I was treated for asthma.
IMHO, because I've lived with this for most of my adult life, I know the difference between asthma and BHS. I'm not saying I don't have asthma and it definitely can be a stressor but the BHS symptoms are very different. I am the only one that knows how I feel.
My follow up with my PC today went well. I have a list of 25 symptoms that concern me. We had a real in-depth discussion. I'm blessed to have a PC that listens. Tomorrow I start on digoxin which doesn't make me happy but I will try it to see how it affects me. No more prednisone which I am thrilled about. Asthma meds if and when needed.
Broken Heart Syndrome, (Stress Induced Cardio Myopathy), is real.
For more information about BHS if interested:
Thanks to everyone for thoughts and Prayers sent my way.