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Janice Find out more about Janice
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  • Chest Pain

    My daughter Tara, has posted a few times on this forum, but to refresh she is now 26 yrs old, has had a septal ablation, Myectomy and dual chamber pacing all in the year 2000.
    She has since been functioning quite well until the last few months when she has started having episodes of chest pain, dizziness and becomes ashen white.
    Yesterday the chest pains were severe and lasted for more than half an hour and she was very dizzy. She was admitted to our local hospital for monitering and will be seeing her HCM specialist as soon as possible.
    My question to anyone who has been through this is that all they seemed to know what to do with her was following heart attack protocol which was fine considering what a small hospital it is, but I don't recall ever seeing any information about any relation between Obstructive Cardiomyopathy and heart attack.
    Thank you for any information
    Janice

  • #2
    Janice, I'm glad Tara was admitted, but esp happy that she will be seeing an HCM specialist. Is the hospital arranging this? Have they consulted over the phone already? I'm sure by now they have blood tests back with enzyme levels and hopefully will have more info for you. Get that HCM eval ASAP. I know this doesn't answer your question, but you're doing the right things so far by being there and getting the eval. Best wishes, and keep us posted. Linda

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    • #3
      heart attacks

      Hi,

      I'm not sure exactly what you are asking, but heart attacks are due to blocked arteries and HCM is independant of that. You can have coronary artery disease AND HCM, but they are not related.

      HCM can cause elevated enzyme levels (which is also what happens during a heart attack) but usually just troponin and not all four. This means that some heart damage is occuring, but it is due to the HCM and not a "heart attack" as we think of it. It is also usually very small amounts and incremental as opposed to the heart attack of one fell swoop of damage.

      Her symptoms could be due to a change in her HCM that the ICD/pacemaker can't adapt to or something else. Who is her specialist?

      Keep us posted,

      S

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      • #4
        Thank you Linda and Sarah for your response.
        Tara has had blood work done to check enzyme levels and the information given to us was that there was not heart damage showing by her enzyme levels. I think what I was asking was if this was heart attack protocol, would it have much relevence to her HCM and you did clear that up for me. We are both very cautious in this situation because as I mentioned earlier it is a very small hospital and we all knew that it is important for her to get to her Specialist including the doctors at this hospital.
        Tara's HCM doctor is Dr. Wigle at Toronto General and his knowledge of this disease is incredible and I understand internationally recognized.
        I think we both understand that her symtoms are showing a change in her disease again and we will have her seen by Dr. Wigle. I think it seems so difficult how this disease keeps rearing.
        Janice

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        • #5
          Janice, Dr. Wigle is well known to the HCMA - you've got one of the best. He knows us too - great guy. As for the hospital you are in, I find it reassuring that they admitted her, that means they are looking seriously at her heart and not ignoring it or belittling it. "Heart attack protocol" will make sure she is watched carefully for any events. A concern would be if she were given Nitroglycerine for chest pain and had a bad reaction (it is normally contraindicated in HCM). But under the close monitoring situation, they would pick up any bad reactions quickly and stop or change any meds as needed. I would doubt that many local hospitals have an "HCM Protocal" so a better and more discriptive term would "chest pain protocol" rather "heart attack protocol". The important thing is that they will work with you to get to Dr. Wigle. Stay in touch, Linda

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          • #6
            Linda hit the nail on the head...
            Your in good hands with Dr. Wigle (send out regards).
            Stay way from nitro.
            Asprin should not hurt anything (as Dr. Wigle)
            Get her on her back and raise her legs if she begins to feel the pain coming on... try to get her to stay as calm as she can...getting upset will only make it worse. ( I speak from a great deal of personal experience!)
            A change of meds may be in order. I can not offer mush more in the terms of ideas as she has had an ablation at a rather young age and there is not enough data on post ablation patients with these symptoms. Please note these symptoms may have nothing to do with the ablation or the myectomy - it could simply be the disease itself...but carefull evaluation is needed to figure this out.
            We are here if you need us,
            Lisa Salberg
            send my best to Tara!
            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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            • #7
              Hi Janice,

              I live just north of Lindsay, Ontario and I also see Dr. Wigle at Toronto General. The care I received between him and the regular cardiologist was night and day. And in fact your are right, another specialist I see told me he was internationally known.

              So, Tara is in very good hands. It will ease you mind going to see him. I know it did me.

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