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  • my doctors are stumped

    [my doctors are stumped]

    Author: shannon (---.oshw.interhop.net)

    Date: 03-22-02 14:07

    I am a 25 year old mother of three ( 4 yrs., 3 yrs., and 20 months). I was diagnosed with mild hypertrophic cardiomyopathy while I was pregnant with my last baby. They've told me not to have any more. My doctors are very confused as to why I have so many symptoms such as palpitations, breathlessness, chest and leg pressure. Climbing a flight of stairs or doing anything quickly (running to get the phone) causes me to have to stop to catch my breath and wait till my heart slows down. This is really hard because I feel like I can't do as much with my kids as I'd like to. I'm always tired and I sometimes nap in the afternoon because I just can't stay awake anymore. This is really hard on my kids. My doctor put me on atenolol which worked a bit but I was too tired to function, then we tried monocor which didn't work at all, and then chronovera which again didn't work. Now he's stopping the meds and referring me to a specialist at an IHSS clinic. He says he's unconvinced that my symptoms are a direct result from this condition. I'm tired and scared and I don't know what to think anymore. My sister died from this when she was 10 right in front of me and we've also had at least 3 other sudden deaths in my family. Is there anybody out there who has these same syptoms without any blockage or am I the only one? My one doctor (I've never seen him since) told me that I needed to exercise to increase my stamina. That I was weak and feeble. This I don't believe: it takes a lot to raise three kids. If anybody has any advice please respond. Thank-you.

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    [Re: my doctors are stumped]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-22-02 16:04

    Dear Shannon

    Shannon, there isn't any reason to die suddenly from HCM anymore, now that they have implantable defribillators. This is what the VP DIck Cheney has. It shocks your heart back to normal if you have a fatal arrhythmia. I think you should get evaluated for one right away!

    Please call the HCMA office RIGHT NOW to ask them about the specialist your doctor is referring you to. Or to get the name of someone in your area they recommend. What is your cardiologist's reasoning for thinking that HCM isn't causing your symptoms? THey should just like what everyone I know with HCM goes through. I know that when I'm in atrial fibrillation, I feel exactly like you describe. I'm taking Corgard and Tikosyn which keep me in rhythm and improves my quality of life greatly. There are stronger medications, plus the defibrillator/pacemaker may be just the ticket for you. Please read the other posts on this board as many people with HCM have them and are very grateful.

    You should get all of your children tested every year for HCM, by the way. In fact, it sounds like everyone in your family needs to be evaluated for a defibrillator --at least anyone directly related to someone who has died.

    Please keep us posted on your progress.

    Sarah

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    [Re: my doctors are stumped]

    Author: shannon (---.oshw.interhop.net)

    Date: 03-23-02 14:23

    Dear Sarah,

    Thank-you for your response. The doctors that my cardiologist has referred me to run an IHSS clinic that has been around for about 25 years so I hope they are really good and can offer me some help. My cardiologist that I have now just feels that there's maybe something else there that's wrong because he feels that the septum has not thickened enough to cause these symptoms. All I know is that I never had this condition when I was checked at 18, I was checked every year from age 11-18 because of what happened to my sister. Then they found it when I was 22. I guess maybe my doctor didn't recommend the pacemaker because he says that my heart rythm is normal, just fast. I don't know why he doesn't want to help me anymore, he says he's stuck as to what to say now. Also, do you know whether or not this will get any worse? They couldn't answer that either. Nobody seems to know a lot about this, they just keep sending me from one doctor to another. How's your health now by the way? What was your growth like when they saw you? Did you have any blockage?

    Keep well,

    Shannon.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: my doctors are stumped]

    Author: sarah beckley (---.dialup.mindspring.com)

    Date: 03-23-02 17:30

    Dear Shannon

    In reverse order:

    My HCM was discovered when I was 13 and my thickening is actually up the outside edge of the left ventricle wall, and not septum, so I don't have any obstruction. However, my heart beats very hard, so hard I can feel it in my head, neck and torso. I can't lay down on my left side for feeling it beat! I go in and out of atrial fibrillation. Because I went into atrial fibrillation 2 years ago and they cardioverted me without a blood thinner (long story), I had a transitory ischemic attack (TIA aka mini-stroke). I'm fully recovered but have yet to regain my endurance and muscle tone (I'm a lazy butt). I'm stable now but I'll be on blood thinners the rest of my life and I'll never have children. I'm ok with both, but my husband wasn't, so we got a divorce.

    It is typical for HCM to show up in the teens and early 20s. It is great that your rhythm is normal, just fast. And it is good that your doctor has recognized when he is out of his league and you need to see a specialist. If he can't help you, he shouldn't prevent anyone else from it. But I know it feels frustrating.

    They can't tell you if your HCM will get worse because every one is different, even within families there are differences. My mom, brother and I all have HCM but what works for my mom doesn't work for my brother and I take a medication my mom refuses to take and vice versa!

    Have you had an electrophysiology study? This is the test that will show if you are likely to die suddenly and with your family history, it is not a bad idea to have it done. It is an out-patient procedure where they run a catheter into the heart and poke it a bit (my technical terms!!!) and see if they can make it do dangerous things. If it doesn't --great! If it does, then you can get an ICD to prevent any dangerous rhythms (including tachycardia) from going too far.

    If you e-mail the HCMA your name and address, they'll put you on the mailing list. They are a great resource. What clinic are you being referred to and when do you go?

    I hope I've answered everything. Please keep asking and let me know about the clinic.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: my doctors are stumped]

    Author: Bob (---.dyn.optonline.net)

    Date: 03-24-02 01:06

    Sarah and Shannon,

    I totally agree that Shannon should be evaluated for an ICD, especially because of the family history of SCD. I want to caution, though, that many leading HCM experts do not rely on EP study results in determinining SCD risk level in HCM patients. This is because it is an invasive procedure, and has not proven to be a very reliable predictor of SCD in HCM patients. I initially learned this from Lisa, and confirmed it through my own research. I can cite several very credible references (B. Maron, M. Sherrid, etc.) if you wish. I'm sure Lisa can do the same. Risk stratification is commonly done based solely upon the individuals specific "High Risk" indicators, which have been categorized based on years of statistical data. I would suggest discussing this with the HCM experts you are going to see.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: my doctors are stumped]

    Author: sarah beckley (---.dialup.mindspring.com)

    Date: 03-24-02 07:21

    Dear Bob

    Thanks for clarifying that. I was simply relying on my personal experience with my local doctors who act like the EP study is "it." Clearly, they are a little out of the loop. I'm a little deficient in ICD info as I don't have one.

    As I think I've mentioned to Shannon earlier, she should talk to the HCMA office about her situation and to find out what they know about the specialists her cardiologist has recommended.

    thanks again,

    Sarah
    NOTE: This is a post from the previous forum message board.

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