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In Africa, just diagnosed

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Sllozier Find out more about Sllozier
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  • In Africa, just diagnosed

    Hello Everyone,
    I am in Tanzania, East Africa as a missionary and was diagnosed last week. I am 38yo female, married with five children. I had preeclampsia with all four pregnancies (last was twins) and was on bedrest. My mother has HCM and is considering transplant after many procedures. Anyway, last week I fainted in the middle of the night and broke my nose and fractured my skull. I have no recollection of the event other than a stomach ache and palpitations when I sat down on the toilet. The next afternoon I made it to a hospital with a cardiologist and echocardiogram! A true miracle considering where we are located. The doctor immediately saw a septal bulge, mitral valve regurgitation and dystolic dysfunction. He put me on Norvasc 5mg and Plavix 75mg and told me to come back in a month. We have decided to instead return to the US for evaluation and future care. As much as it saddens me to leave our ministry here, my husband and kids need me, and I need to take care of myself. So, I have been looking back on the last four years since having our twins and remembering the palpitations, dizzy spells and heart racing episodes that have occurred. Things are making more sense and perhaps I knew this was the case but didn't want to accept it after watching my mom's battle with this condition. At this point, if I walk from one place to another or fold laundry, I have chest pain and shortness of breath. I called that cardiologist back but he can't see me until Sunday. We are in the process of purchasing our plane tickets back and won't leave for another few weeks. Not sure what is normal as far as chest pain/pressure or what I should consider an emergency.
    SLL

  • #2
    Dear Sarah.....
    It is a great good fortune that you are able to return to the US for care. Wherever you decide to live on your return please go to an HCM Center of Excellence to be evaluated. Your medication regime right now does not match the usual prescriptions in the US for HCM. Norvasc is used for high blood pressure and not usually in cases of HCM with obstruction. Plavix is a drug that causes platelets not to stick together and is used primarily after stent placement for Coronary artery disease. So you may have other things going on that your cardiologist is trying to treat or more likely he is just not equipped to know the nuances of treating HCM. If you can get ahold of all your tests and records to bring back to the US. That would be helpful. In the meantime educate yourself as much as you can on HCM. And once you have your calendar set.... make an appointment for a full evaluation at a COE as soon as you get home. Until you are properly worked up, you may want to refrain from vigorous excercise. Other tips that help with chest pain in HCM are: Stay well hydrated, Eat small meals and rest after meals , Avoid burst activities where you jump up and run to do something, warm up before exertion, keep a record of when you have chest pain, what preceded it and what relieves it including a numerical scale 1-10. All of this will help you and your cardiologist understand how the HCM is affecting your daily life.....and how various treatments make it feel better or worse.
    Last edited by JillC; 02-14-2018, 11:39 AM.
    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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    • #3
      Thanks so much! I am keeping hydrated and resting but I will keep a journal now. I was concerned about the medication when he gave it but I was concerned about going against his recommendations. I am positive he has no experience with treating HCM.

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      • #4
        In general The goal of medication in HCM therapy is to reduce symptoms.....If your chest pain and sob and arrhythmias are not improved at all, the medications need adjusted....either in type or dosage. Norvasc is a calcium channel blocker that should be able to help with your chest pain so you might be able to work with your local doctor on dosage if you are still having a lot of chest pain ...... Hope you get home soon!
        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

        Comment

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