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david williams Find out more about david williams
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  • Anyone Else Been There

    I have a question, has anyone ever had irregular heart beats at night and then the next day have soreness in the center of the chest area? I have HOCM and seem to be getting more symtomatic as time goes on. I did a bike stress test in Oct 02 and passed out, the doctors could not tell me why that happened. The docs said that they would do another test but I have not ever heard back from them. Thank you

  • #2
    David,

    This sounds serious. Have you seen an HCM specialist? I would suggest you call Lisa at 973-983-7429 next week and talk with her. She can put you in contact with one who is right for you. Also, have you talked to your doctor about an ICD? (implanted cardiodefibrillator) These are sort of like the paddles they use on ER to shock a patient out of a heart attack. It is implanted in the chest and constantly monitors the heart rate and rhythm. Some can act as pacemakers as well, but not all do. If it detects an abnormal or life threatening rhythm it will shock you out of it. It's like calling 911 and they are there before you knew you needed them. Fainting in one of 5 risk factors to be considered when determining whether or not to place an ICD. Please, if you aren't seeing a specialist, call Lisa and get hooked up with one. Take care of yourself.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

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    • #3
      normal and not so normal

      Hi,

      It is pretty standard to have palpitations at night, but your chest should not hurt hours after from it.

      Also, fainting during a stress test is a BIG red flag and not to be ignored. Please call Lisa asap and get to a specialist asap.

      At the very least, you should see a local cardiologist right now and see what your ecg and echo look like (not whatever person you saw before!) right now while you make an appointment to see a specialist.

      You don't mention if you are on meds or if you know anything about your echo, etc.

      S

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      • #4
        Reply to Sarah & Reenie

        I take 150mg of atenolol per day. I don't think that I will be able to afford a specialist, The last time I went in for chest discomfort(felt like pressure) I ended up in the hospital and they did a heart cath. Not fun...I use the VA hospital and the cardio section is the student training division so about 3 students will come and try to make a diagnosis then look in a medical book for an answer. I don't feel like they are much better then the military medicine folks that are my primary care nurse or physician assistant. I have an appt. with the nurse on the 13 of feb. Today I feel better but without any energy. Do you know what the out of pocket cost would be for a specialist? Living in NM, I haven't heard of any HOCM specialist in this area. I don't like to tell my family about my condition they have enough worries. If I get worse or have more pain/palpitation then I will seek help at the VA emergency room. Thanks for your reply!

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        • #5
          money

          Dear David,

          I'm very worried about you. Fainting is not good and while it can be expensive to travel to a specialist --you only have one life!

          I'm guessing that military medical care is all you have? You CAN get them to allow you to see a specialist, it just takes extra effort and paperwork. There are a bunch of people here who can speak on this issue if you ask --I would post a new topic about it.

          You can call Lisa at 973-983-7429 or e-mail the office and ask them to call you (include your number, and when you are home, of course).

          Keep us posted and if you are uninsurable, consider: http://www.aegis.com/pubs/nmap/1999/322-chip.html

          take care,

          S

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          • #6
            costs

            Oh, yes, cost. Well, every doctor is different, so I can't say "oh, Cleveland costs this and Mayo costs that."

            When was your last echo?

            S

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            • #7
              Get the appointment with a specialist... they will work out the $$ with you. You need to be seen by someone, your symptoms are significant and you may be placing yourself in danger.
              Call the office if you have any questions or need some names of centers.
              Lisa
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

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              • #8
                Re: Anyone Else Been There

                David, Please get yourself checked out. Your life is more important than money.....You are number 1. Take Care of yourself!
                Tammy

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                • #9
                  Re: Anyone Else Been There

                  David,

                  You stated "I don't like to tell my family about my condition they have enough worries". Has everyone in your family also been checked? Because they may have it too. It is almost positive that you got HCM from one of your parents, so if you have siblings or children they have a 50% chance of having HCM also.

                  Please see a specialist. I paid about $2,000 out of pocket to travel 2000 miles away and it was well worth my life.

                  Matt

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                  • #10
                    Re: Anyone Else Been There

                    David, I feel you are walking a fine line here, fainting during a stress test, I believe indicates your blood pressure crashed and that is one big red flag for HCMers.
                    Along with pain in the chest and palpataion, I'm sorry to sound fatalistic, but you maybe walking down a street you won't return from.
                    Call Lisa, she will have some great advice and it won't cost you a penny.
                    Sound like a good investment to me.
                    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                    So if you are capable of thought then you are capable of great things
                    Good luck and stay well.
                    Glen

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