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How Do You Mend a Broken Heart

Tuesday, September 26, 2017

"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.

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Member Comments About This Blog Post
    1371 days ago
    emoticon Well it is great that now you can get the treatment necessary for your Broken Heart! Stay strong my friend! emoticon emoticon
    1384 days ago
  • no profile photo INCH_BY_INCH
    emoticon emoticon emoticon
    1389 days ago
    never heard of it, and thank you for the really good description,
    1390 days ago
  • LINDA!
    emoticon God bless you.
    1390 days ago
    So thankful your PC is listening. Hope your treatment med helps without side effects.
    1391 days ago
  • KMW987
    Glad you finally know. Must be somehwhat relieving! Hopefully now with a proper diagnosis you can move forward!

    1391 days ago
    Glad you KNOW what it is about....We patients are usually WAY AHEAD of the doctors in our diagnosis or in the plural,diagnoses ,of what is wrong with us because WE live in our bodies ,not THEM!!! Good for you ,Ceri and I DO think you are BRAVE as your page says! Thank you for heading up the Fall Challenge! I am ready and finally healthy and HAPPY to be a participant!!!!!!
    1392 days ago
    It stinks to be the interesting case, but at least you have a diagnosis now. The next key step is to try to figure out your stress triggers if there are any specific ones. emoticon
    1392 days ago
    I'm so glad you finally have a real diagnosis!
    1394 days ago
    Yes it is. Good luck with the new treatment.
    1394 days ago
    Ceri, I have heard of this before. I am glad you have a good PCP who listens. I sure hope the new meds help.
    Thank you for the update. emoticon
    1394 days ago
    Thank you so much for sharing Ceri! I understand totally about the Drs disrespecting you. I have several health issues and it seems when I have to go to the ER they are the worst at figuring out what is going on. I also have a wonderful PCP that really listens. If it weren't for him ordering certain tests they might never have discovered that I had a brain aneurysm.

    I read that article and it sounds as if you should make a full recovery. I hope they have you on the right medicine to make this happen. You will still be in my prayers.

    God bless you and keep you on your journey! Have a fabulous day!
    1394 days ago
  • MAWMAW101
    Sending you love. It is amazing how hard we have to fight to convince some people that "we" really know how we feel!
    My problem is called Syncope Episodes that means you pass out for "no known reason" according to tests.
    Hello!, passing out isn't normal, I can "feel" something has changed, I'm now in my 70s and it just started!
    This week finally a Dr taking me seriously, willing to try to find reason before I end up having a heart attack or stroke because of lack of oxygen!
    emoticon All the very best to you. Knowing the truth is power to at least live as best we can.

    1395 days ago
    "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."

    I've been there. Mine was related to another illness, though, but I know how this feels. And it's particularly frustrating to be disrespected (and have your concerns ignored) by medical "professionals." Sadly, I see more and more of this everyday. They'll take one look at your pulse ox(imeter), see that it isn't below whatever the magic number is that day (90%, 95%, etc.) and then tell you you're breathing fine b/c your numbers look good ... even though you really aren't. (In my case, I was perpetually throwing up every few breaths, so I was struggling to get air in -- but, hey, my pulse ox was good, so nobody cared.)
    I do not have the benefit of a PC that listens. Mine keeps trying to give me diagnosis and medications for issues I don't have, and everything I say falls on deaf ears. My specialist is no better. Consider yourself very fortunate that yours do -- sadly, I believe they are the exception to the rule.
    1395 days ago

    Comment edited on: 9/28/2017 1:45:28 AM
    I've heard of it before - emoticon look they even have an emoticon for it! so sorry you have been dealing with this for so long and sending you hugs and prayers. emoticon
    1395 days ago
    Hugs, you sure have been through a lot. It is so difficult when the medical professionals don't listen. Please take care of yourself.
    1395 days ago
    Ceri, I have been off of Spark for awhile and just this evening came on to see this.I can't imagine how difficult this all must have been for you and thank you so much for sharing this information with others. Some things are so difficult to diagnose and in your case apparently one of the stressors masked the underlying issue I guess. I do so hope that this knowledge now helps you. My best thoughts are with you for better days to come!
    1395 days ago
    1395 days ago
    Ceri, thank you so much for the thorough information. It helps everybody become aware of such an unknown condition. I hope the new med will work wonders. Those are too scary and dangerous symptoms to bare with. Best wishes. I'll keep you in my thoughts. Hope you can keep us updated on how you are doing. emoticon
    1395 days ago
    I hope this new diagnosis and new treatment will make you feel healthier. It is awful to have to live with a problem like that and not know what is really going on. You should have peace of mind now. You listened to your body and knew there was a problem.I am glad your doctor figured it out for you.
    1395 days ago
    Thanks for sharing this. I hope they are able to find a possible solution so you don't have major issues going forward!
    1395 days ago
    Hugs to you. I don't know what else to say, but I do want you to know I'm here and thinking of you.
    1395 days ago
    I am so glad that you finally had a DR who understood what was happening, and also glad that you have a PC who is willing to hear what you have to say. we all know our bodies better than anyone and I can't begin to imagine how frustrating it must have been to have some telling you something that conflicted with what you knew was happening.

    Please take care. You are a precious soul and I will prayer for continued good health and recovery. emoticon emoticon
    1395 days ago
    Wow, never heard of that before. (How arrogant to think I would have, when so many medical people that have treated you hadn't!). Maybe you should wear a medical bracelet with "Takotsubo cardiomyopathy" on it, for possible (but hopefully never) future episodes? I hope the digoxin helps. Is there any surgery, like bypass maybe, that will help, or is the cardiac muscle permanently damaged forever more? They do so much now with stents and heart disease, it's hard to believe there's not something available that could decrease your risks of future episodes. emoticon emoticon
    1396 days ago
    Thanks for the education. How frustrating for you. Be well.
    1396 days ago
  • CATE195
    Ceri, thank you for sharing and explaining BHS. It helps me to understand the difficult situations you've been through and continue to deal with on a daily basis. Glad to hear the prednisone was stopped and surely hope the dioxin helps.

    You will continue to be in my prayers. emoticon
    1396 days ago
    Thank you for sharing this important information with us to increase awareness. It is so difficult when the medical community is not receptive to patient input; a person knows their body best. I am sorry this has been such an ordeal for you. Hope your treatment plan works wonders and you are feeling well again. emoticon
    1396 days ago
    Hugs to you.I always follow closely what is happening and pray for you.Having been in a dreadful accident myself I know how horrid your accident was.When you told me about it I really felt your pain.I am so glad you have a diagnosis. You are an amazing person and you do so much for others.You really are a treasure !
    1396 days ago
    So glad you are finally being heard; we may not be doctors, but we know our own bodies better than anyone.
    1396 days ago
    The article was VERY interesting Ceri! TY so MUCH for including the article. it was so weird in that my Dad had a heart attack the night he found out Nana had passed away. AGAIN the night of her funeral, makes me wonder if this was it? But, he's passed now also.

    This has to be so hard for you. I've been thinking of you. I hope they can help you so it's in more control.

    HUGS Ceri!
    1396 days ago
    Thanks for sharing such a personal story, Ceri. I hope you find the treatment you need now that you finally have a diagnosis. I'm sending hugs and strength your way.
    1396 days ago
    Hope the med helps more than hurts and that you can get those 25 symptoms resolved. emoticon
    1396 days ago
    Will pray the new med works and you are soon feeling well. After all this time you must be exhausted, frustrated and more than ready to be well. Prayers continue emoticon
    1396 days ago
    Glad you received a real diagnosis
    1396 days ago
    emoticon emoticon
    1396 days ago
    I am so glad you are feeling better and FINALLY have a diagnosis. I can't help but wonder why, given your history and diagnosis last February 2016, why the ER was so reluctant to treat your condition as cardiac! A simple Echocardiogram easily diagnosis decreased cardiac output. Hopefully, they will listen to you if there is another incident. And add to this the organization of the 5% Challenge! You are one strong lady emoticon
    1396 days ago
    Interesting article. emoticon
    1396 days ago
  • PHOENIX1949
    My sister-in-law, an RN, was recently diagnosed with this after several hospitalizations. Thank you for sharing your story and the link.
    1396 days ago
  • CAROL_31649731
    Thank you for taking the time to explain what's been going on with your health. How frightening...good for you, for pushing & standing up for you yourself. Glad you have a primary that will listen to you.
    1396 days ago
    Thank you for sharing such a personal part of your life. What a struggle it must be for you to have a strange physian listen to you. Thank goodness your primary is a good listener. I wish you well with your new med and thank you for educating us.
    1396 days ago
    So sorry you are going through this situation. I will keep you on my prayer list emoticon
    1396 days ago
    I'd heard of mostly related to widows. I didn't realize it had such longstanding consequences. It is amazing & frightening how little the medical profession really "knows" about issues out of the ordinary.
    1396 days ago
    I have never heard of broken heart syndrome before. How terrifying that must be and to have doctors who don't recognize or discount what you know to be going on with your own body. Over the years I have come to realize I know my body and I have become a strong advocate for myself. Will keep you in my prayers.
    1396 days ago
    emoticon Oh my.
    1396 days ago
    I hadn't heard of it either. Thanks for telling us about it. You continue to be held in my prayers.
    1396 days ago
  • BJK1961
    Absolutely riveting story! Best wishes for any improvements that can be achieved. I know the suffering caused by such conditions and the disbelief received.
    1396 days ago
    Oh my...you have really been through it my friend. What do you think precipated the broken heart syndrome? I think it is valiant and brave of you to blog through this situation. My mantra is 'the truth shall sit you free' and I have found that as I openly blog through my 'stuff' I feel better and better. I've also recently started learning about a new technique that is supposed to release pent up trauma from the body. Sort of an emotional accupuncture. I'll tell you about it as I learn more.

    Hugs to you my sweet friend...take it easy and keep it real! emoticon
    1396 days ago
  • no profile photo CD4994568
    Wow! I hope they can finally get this all sorted out. That is a very long time to not deal with a problem.
    1396 days ago
  • no profile photo EVIE4NOW
    I had not heard of this before now. I have to see my cardiologist in the morn. Will see if he is up on it lol.
    1396 days ago
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