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Nigel Find out more about Nigel
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  • I'm back!

    Hello everyone.. I hope you've all been well..

    Itís been a few days since Iíve posted a message on the forum. I was in the CCU here at OU Medical Center. I was seen by three EP doctors, and four cardiology fellows. It was most certainly nice to have doctors all around, but I wish they would have had more experience.

    They recommended I do a test called a Ďhead-up tilt tableí. They put me on this table and tried to make me pass outÖ It was so horrible. After only five minutes, my blood pressure dropped to 60/50 and my pulse went over 160bpm. They diagnosed me with vasovagal syncope.

    I was monitored for about 46 hours and they didnít find anything other than sinus tachycardia and an abnormal rhythm. I was happy to hear that my passing out was blood pressure related. However, after all was said and done, they told me to go home and come back in a year for an echo!!!!!!!! I was like what?? They said that my septum isnít large enough for concern and I just need follow-up care.

    Iím so sick of this state... I already have my bags ready to go and have the money for plane tickets. Can anyone suggest a good doctor? Iíll be willing to go anywhere in the US.
    I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time Iíve had with you.

  • #2
    Hey Nigel,
    Iím glad to hear your back. (Actually, I didnít know you were forth.)

    Man, you just gotta talk with Lisa and have her spearhead your care. She will know who to suggest you see, will be able to help get you an appointment, and guide you through all the other falderal that accompanies these types of proceedings.

    By the way, if you want to find out what it takes to make you pass out, my wife would be happy to smack you up side your head with a frying pan. (Actually, sheís not a violent person, but if I imposed on her - - -).

    Take care my friend, and keep us posted.
    Burt

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    • #3
      Nigel, Lisa will prob be in the office tomorrow. Please try to call her. Also, try to get a complete copy of your medical records while everything is still fresh and you can remember what all was done.

      It's good to hear from you again. I can only imagine the frustration you must be facing right now. I hope you are able to line up with an HCM specialist soon. Please keep us posted. Linda

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      • #4
        Hi Nigel,

        I have been there too. The doctors here do not know what to do with me.

        I am sorry you had to go through that awful test.

        And
        However, after all was said and done, they told me to go home and come back in a year for an echo!!!!!!!! I was like what?? They said that my septum isnít large enough for concern and I just need follow-up care.

        Do you know what your last echo report said about your septal measurment? When was your last echo?

        A year until the next echo?? Geez

        But I'm kinda in the same boat as you are. I need to see another Cardiologist. I may go to the Mayo Clinc over here. But that is going to cost me a fortune.

        I do not have the energy to fly to Cleveland. I honestly do not know how I will be able to see a HCM specialist. I hope you get to see one very soon.

        Please keep us posted on how you are doing.
        49 yrs. old
        Diagnosed at 31.
        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
        My brother passed away suddenly at 34 yrs old from HCM.
        2 teenage children, ages 17 and 15.

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        • #5
          Well, they said that my septum is now 1.5 cm (was 1.6 cm).
          I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time Iíve had with you.

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          • #6
            Well, as you probably know, it's not the size of the septum that counts in a lot of ways. If you're at 1.5 cm but it's at the top of the septum where it obstructs the blood flow, you still have a problem. My husband's is 3.8 cm but it's in the middle of the septum where it hardly causes a problem at all. Call Lisa. See the specialist. Take care.

            Reenie
            Reenie

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

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