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  • Hi Group

    Hi, everyone, its been a while since I posted and I have been having problems so thought I would say hi and post a problem that I have posted in the ICD topic section but in case no one reads there will also post it here.

    I have had hocm for years with symptoms of shortness of breath, palpitations etc but no history of any other family members with this disease nor any sudden death in the family.

    Recently I have had more heart palpitations and had fleeting blackouts twice and I saw an electrophysiologist today because of the blackouts (2 in 2 weeks). He wants to implant an icd/pacemaker combo wed so I don't have much time. He thinks the blackouts are dangerous. They only last a second and I have never gone all the way out. But I have been wearing a monitor for a few weeks where you hit a button if you feel something funny and call them in over a phoneline. So far nothing I have sent in has been a big problem but today at the doctor office he had a machine that read my monitor and he said there was a long run of dangerous tach on it and I should get the icd asap.

    He also wants to try that thing where they pace your heart a certain way to try to alleviate the obstruction. He claims this is 'new'. As far as I remember from this group, that is really something from a few years ago and they decided it wasn't all that beneficial. Can anyone tell me more bout this or if I should get the pacemaker also? I have so many questions and little time. I saw Dr. Pravin Shah at one time but I don't know if I can get ahold of him before wed to get his opinion. And I haven't seend him for close to 2 years.

    Whats anyone's opinion about this pacing and is there something 'new' in this realm? Also, can someone tell me how painful this surgery is and how long you are out of commission? And does anyone have a pacemaker and if so, did it make your heart feel better or worse? It all scares me and I don't have much time. He wanted to do the procedure today but I had to take care of family matters first so it is put off til wed. Any and all info is appreciated. I am not sure I want the pacemaker part and am even wondering if the icd is necessary. I do not take any meds because of bad side effects. sorry for the long post. Kathy

  • #2
    Re: Hi Group

    Kathy ,

    Hi. The devises these days are usually always 2-fold . That is defibrilator / pacer combo. That is a good thing. As the HCM heart ages , it is not unusual for pacing to be needed. Also the standard setting of parameters as with a higher heart rate and a lower heart rate is a necessary as well . The defibrilator is alert to high heart rates and dangerous arrythmias and ready to take action if needed.

    If the heart rate plummets or falls below the set rate the pacer picks up the rate untill your heart gets back toabove that setting. Or the doc changes the setting to lower if they see you pacing too much and you are tolerating the lower heart rate. Same true for the higher rate setting. The pacer will over ride and pace the heart in an attempt to lower a higher rate. It will continue to do this untill your heart goes back to a l lower then this setting rate. If it becomes too high and an arrythmia indicates a shock needed, the defibrillator will make the decision. Example: My settings are 50 BPM . If my heart rate goes below 50 the pacer begins to pace to keep it at 50. Higher setting is at 120 BPM. If my heart rate goes above 120, the pacer paces to bring it down. The higest for me is 180BPM. If my heart rate rises to 180BPM , my defibrilator wakes up , monitors for so many seconds and decides if it should give me a shock to convert the rhythm.

    As far as the discomfort , usually a night in the hospital to start you on your way. The site is only a little tender some feel more , depends on your pain tolerance, and you just don't raise that arm for ~6 weeks to allow the leads to set into the muscle.

    Regarding the exercise to pace to reduce the obstruction. It, the theory has been a round for more then a " new" status. The initial investigator who supposedly had done all the research and positive outcomes had falsified his info causing the experts to throw out his tests and the results. This has left all electrophysiologists to do their own experimenting and tests on their patients. It does not work usually as I have read and not on me. It has been known to harm and even worsen some HCM hearts. Please be carefull with this. Get all the facts. Initially I thought it was helping ( several months) but that good old placebo effect can carry us for a while . I truly wanted it to work and it felt like it was . That faded after awhile as I realized I was not better and probably a little worse.

    Now that is what the scientists need to hone in on. If a mind can believe we are better and consequently we feel better , how do we get the mind to get just the right chemicals going to really fix us? Oh something great to ponder.

    You have a lot to consider. Did you say your docs were specialists in HCM? I am not too sure. If not I would get the devise ASAP and get to a specialist as soon after as I could.

    Hope this has helped. Good luck to you.

    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


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