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Lisa Salberg Find out more about Lisa Salberg
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  • #91
    Thank you for the warm welcome, Jill.

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    • #92
      Hi all. Newly diagnosed here. My name is Sora and I am....was....an extremely healthy 69 year old widow. I have been diagnosed hypothyroid for the last 30 years but otherwise have always been extremely active and poster child healthy. In one of my many lives I was an organic farmer and have actively followed what came to be known as a heart healthy diet for easily 40 years. Up until last week I commonly walk 2-4 miles a day and was working in a health food store 20 hours a week of continual lifting and running around. Last week I went to a new hard core aerobics class. 10 minutes before end of class I got extremely tired but pushed through to the end. Afterwards, I collapsed in the lobby. I told everyone I was fine but was seriously not. My sister-in-law gave me a ride home and my vision started to white out. I thought I was dehydrated and tired with indigestion. I drank a lot of water and collapsed on the bed. Slept the whole day, got up really dizzy with chest pain and cold sweats but still clueless. Slept the whole night and didn't feel any better in the morning. Got an appointment with my GP for late in the afternoon. I thought my thyroid meds were off. My GP heard a murmur, totally new! and did an ekg and rushed me to the emergency room. In the 5 following days in the hospital they did an angiogram that showed my arteries to be totally clean and my blood pressure crazy low 75/60 The sonogram of my heart showed I had Tako subo cardiomyopathy along with the hypertrophic cardiomyopathy. They told me I was incredibly lucky to be alive. My heart was only functioning at 30% capacity. I have a wonderful cardiologist here in Colorado who admits this is out of his realm. He recommended several top facilities that were all far removed. I asked about Boston since my son lives there and the doc found Tufts that seems to be highly reputable. The doc has a colleague there and sent him all my test results and the two of them have planned a regimen. They put me on beta blockers for now and I improved enough to at least go home. They will monitor me and said surgery may still be necessary.
      Grappling with all this new info is beyond overwhelming. I am grateful to this group for its existence! Trying hard to not get lost in depression! Many thanks to you all for being here!

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      • #93
        Sora, welcome to the forum.... This forum can be a bit quiet. If you like a higher activity type of forum, Lisa Salberg has an HCMA Facebook group you can join.
        All of this can be a bit much at first.... but going to an HCM center of excellence, like Tufts, for evaluation and a treatment plan is THE very best thing you can do. After they give you a treatment plan, your local cardiologist can have an ongoing relationship with your Tufts Cardiologist and manage your condition at home.
        I feel like we must be " Heart Cousins" I am also 69 years old, I live in Denver and I also had an episode of Takot-subo Cardiomyopathy on top of my HCM with a decrease in heart function to 30%.... the combination of the two cardiomyopathies is pretty rare. The good thing about Takot subo is that it is reversible....I believe I got back to a normal EF after about 3-4 months. I'm not sure that an accurate HCM eval can take place if you still have the effects of Takot subo....so that would be a good question for docs at Tufts before you set up your initial evaluation. HCM is in general a very manageable condition....and you likely will return to the lifestyle you enjoy. The Takot subo is what sent you suddenly down the rabbit hole, the HCM is something you have probably had for years but showed up when you went through your current tests. Ask questions, learn about HCM, keep your healthy lifestyle and use HCMA as a resource and support. Feel free to send me a private message if you would like.
        Jill C.
        After years of symptoms:
        Officially Diagnosed HOCM 2006
        Myectomy 3/11/13 at non-COE
        Extended Myectomy 7/23/14
        At Mayo with Dr. Joseph Dearani

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        • #94
          Hi Jill! Thanks so very much for your response!!! Still figuring out this website. How do I get to send a "private message" Heart cousins for sure! At my local hospital in Longmont all the docs and nurses would look at my chart and all said the same thing, "Has anyone told you how Bizarre you are?" Not very reassuring! Then they all started asking who died in my family! I've been under those kinds of stresses in my life but not as much now. Although all my closest friends tell me I have been really stressed. Was your Takot-subo brought on by extreme stress? Folk here were implying that the takot-subo would be over in 4 weeks but yours took 3-4 months?! Now that I know about hocm, I believe I have had symptoms for decades and made excuses, I'm tired today, I'm out of shape, it's just heartburn, etc etc
          It looks like you went through the myectomy? Are you much better now? Thanks so very much for responding!!!!!

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          • #95
            When I was in the hospital for Takot subo....Everyone kept asking me if I had had a loss etc etc. My trigger was 2 weeks of being on nebulizers and steroids for an asthma exacerbation. They now have gotten away from the title of " broken heart syndrome and call Takot subo " Stress Cardiomyopathy" ..... Not all HCM patients are candidates for myectomy.... butvI was and it has helped a lot. I am out of shape from being too tired to exercise, butvIm working on that.
            As far as Private Messages.... there should be a button next your sign in at the top of the page that says Messages, click on it and select send a new message..... address to JillC
            After years of symptoms:
            Officially Diagnosed HOCM 2006
            Myectomy 3/11/13 at non-COE
            Extended Myectomy 7/23/14
            At Mayo with Dr. Joseph Dearani

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