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POTPOURRI

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  • POTPOURRI

    [POTPOURRI]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 07-21-02 11:09

    Hi, I have a few questions-odds and ends.

    My mom's dx was later in life, 58y/o with symptons about 2 years before that. Most onset is 19-20's I'm 34 and my echo is normal. My question--since this is a gene issue and many genes have been ID'd as the cause--does my family have a 'late onset' type? In other words, since my mom's started late could/should mine start late? And if so, when should my kids be tested? They're 10 and 13. Our GP does not want to test them since my echo is normal. (I plan on asking Dr Asher next time mom goes in. Just wanted to gain some knowledge first.)

    AICD's---it seems that the 24 or 48 halter monitor and a family history are what counts for AICD placement. What about tilt table test/EP studies? VT scares the &%@! out of me. My mom's 48 hour showed " a few PVC's." And we have no known family history of sudden death. So she's 'not at risk.' I know, only 1-2% of HCM's die from sudden death. But........Does any one know about EP studies and HCM, is it worth the effort to ask to have this done?

    I saw the posting back in June about chronic headaches (HA). My mom has freq HA's and OTC meds rarely help. I can't wait for more info about any relationship.

    I understand EF%. The gradient has me confused? This is a bad thing, right? On mom's echo it was listed at rest (68) and with amyl nitrate (166). What are normals, zero? Are mom's #'s bad, really bad or what?

    I think I read that myectomies are done for septums 3cm or greater? Mom's is less. But she failed her stress test (failed it big time.) She has very few and mild symp, just some mild SOB w/activity and rare grey outs, mostly with position changes. UGH!!! Can't figure out my question here!! Her symp, testing and need for a myectomy just don't seem to match. She looks and feels too healty to need a surg that isn't needed often.

    Hydration seems to be important. 2L a day of water. I'm use to 'normal' CHF pt's and we limit their liquids. I know this is not CHF, HCM is different. Why is hydration so important?

    I saw a question about epocrit. The med in a cancer commercial, that it helps w/fatique by increasing red blood cells (RBC's) so then, increasing oxygen. My thought on this.....In cancer with chemo therapy, lots of cells are killed, including RBC's. Epocrit increases the bodies production of RBC's. Great for a cancer pt who has less RBC's than normal. In a 'normal' person or HCM, there is a normal amount of RBC's, so epocrit would make the blood have greater than normal amounts of cells, making the blood thicker. I can't imagine that a compromised heart would like to pump thick blood. And if you have a history of a-fib and on coumadin......Does this train of thought seem right?

    Like I said-some odds and ends. Any input would be great! I'm still working hard at understanding all of this.

    Thanks,

    Dawn

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

    [Re: POTPOURRI]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-21-02 13:40

    Dear Dawn

    I'll try to answer what I can.

    It is possible that you may not show any signs of HCM till late in life. I don't know the statistics on it, but I do know that your family profile does carry a little weight in your personal one. That being said, each expression of HCM varies, even within families and genders. Sorry, not exactly a solid answer.

    It is extremely rare, but possible that one of the kids could get HCM even if you don't show signs -- very rare, but I don't see why the doctor shouldn't get a baseline echo to be safe.

    Hydration is key because the heart sits in a bag of fluid and because most heart medications lower your blood pressure, which is usually normal in HCM patients. In order to counteract that effect and to ensure proper heart function, more water is better. The heart is overworking, so it needs to be able to chill out.

    The risk factors that determine ICD placement are: personal history of vtach, fainting or MI (myocardial infarction --heart attack), family history of sudden death, septal measurements over 3, and adverse blood pressure response to stress test.

    EPS has fallen out of favor as an accurate test of sudden death risk.

    Myectomy's are done if the septum's hypertrophy is in a place that blocks the mitral valve. The procedure cuts away this extra muscle and restores normal function to the valve. If your mom doesn't have this obstruction, then there is no myectomy in her future. Obstruction is _not_ considered a risk for sudden death at this time.

    Gradient: zero is not normal. I think 50-70 actually is normal, but I can't find my cheat sheet on gradients so I'm going to say that this is a preliminary answer and is NOT final. I know Lisa knows this info in her sleep. Someday I will too.

    Yes, thicker blood would be bad, very bad, especially for someone in and out of atrial fib. or on coumadin.

    Hope I covered everything. Good luck with your mom

    Sarah

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

    [Re: POTPOURRI]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-21-02 18:37

    Wow - I feel like I was just given a POP quiz! Thanks I love the brain teasers!!

    1st a correction.... Sarah as right as you are as often as you are... 0 is the normal gradient...and yes I think I know it in my sleep which means I think I need a hobby!

    I have reposted your ??'s With RESPONCE after each... hope it helps and by the way your a great study and have got the basics and the tricks of this down very well in a short amount of time BRAVO!

    My mom's dx was later in life, 58y/o with symptoms about 2 years before that. Most onset is 19-20's I'm 34 and my echo is normal. My question--since this is a gene issue and many genes have been ID'd as the cause--does my family have a 'late onset' type? In other words, since my mom's started late could/should mine start late? And if so, when should my kids be tested? They're 10 and 13. Our GP does not want to test them since my echo is normal. (I plan on asking Dr Asher next time mom goes in. Just wanted to gain some knowledge first.)

    My response - It is recommended that those in families with HCM that the children be screened every 12-18 months up to age 20 and every 5 years there after. Yes your kids should be screened- it had been thought that you must have it to pass it on, we have learned this not to be true after seeing many many cases of "skips".

    Does any one know about EP studies and HCM, is it worth the effort to ask to have this done?

    RESPONCE: Years ago it was thought that possitive EP test meant risk - neg no risk - After many many patients died after neg EP tests it was detirmined that the role of EP testing in HCM has no predictive value, therefore has no role in

    determining risk. Further PVC's are normally nothing to worry about - if she had 100's of them that would be different, but that is rare.

    The gradient has me confused? This is a bad thing, right? On mom's echo it was listed at rest (68) and with amyl nitrate (166). What are normals, zero? Are mom's #'s bad, really bad or what?

    RESPONCE: A normal heart has no gradient - a resting gradient of 68 is rather high, but I have seen up to 3X that number. It is not good BUT the real question is what is her quality of life...how does she feel??? Medications can help if they do not she has options (myectomy/ablation). So bad or good is not the case ...ask mom how she feels, than we can work on it.

    I think I read that myectomies are done for septum’s 3cm or greater?

    Response: Wrong, 3.0 is a guideline to help determine risk of sudden death. Myectomies can be done with septal measurements much lower --1.5cm+ - ablations should NOT be done with septal measurements less that 1.6cm.

    Hydration seems to be important. 2L a day of water. I'm use to 'normal' CHF pt's and we limit their liquids. I know this is not CHF, HCM is different. Why is hydration so important?

    Responce - VOlume volume volume - while you must make sure you are not retaining fluid you must drink fluid to keep your volume up.

    I saw a question about epocrit. ..... I can't imagine that a compromised heart would like to pump thick blood. And if you have a history of a-fib and on coumadin......Does this train of thought seem right?

    response- I would agree with your thinking.

    Great questions!

    Lisa Salberg

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

    [Re: POTPOURRI]

    Author: Dawn (---.cl.ri.cox.net)

    Date: 07-22-02 15:49

    Lisa and Sarah, thanks for the answers. You think I'm a'great study and learned the basic in a short amount of time.' I'm embarrassed to say I've been a RN for almost three years, the whole time on a critical care step-down unit. I feel like I should have known more than I orginal did. But alot of the nurses on my floor were NOT sure of the difference between DCM, HCM and where CHF fell into all of this. And none of them knew what a septal myectomy or alcohol ablation were. I guess if a reg cardiologist does not always ID it correctly, I shouldn't be so hard on myself. But now I'm learning and so are the nurses I work with. Part of HCMA's mission is to educate--I'm trying to do my part.

    Mom failed her stress test and they said she needs a myectomy in the near future. Her major panic attack has slowed her surgery down some-but she'll have it done soon. I was not there for her stress test, so I'm not sure how bad it was. Per my dad, " they couldn't advance her at all without her BP falling very low. So she's obstructed and getting a myectomy." My dad is great man but is new to all this medical stuff and couldn't give me any more info.

    If I read correctly, you said a failed stress test is part of the ICD evaluation. They have said nothing about ICD for her. I guess I'm picking this as my panic area because I deal with ALOT of heart rhythm problems at work. Too much knowledge at times is NOT a good thing. But I have to remember this is HCM and does not play by the same rules as other heart conditions. I'll go with mom the next time she sees Dr Asher and address these concerns in a way specific to mom and her tests. But I like the fact that I now have a GREAT base of knowledge before I ask questions.

    I'll work at some more questions since you love brain teasers so much! (joking) Right now my brain is mush--worked last night (11p-7a) and then went to another hosp where my girlfriend is a pt for AVM. I guess that wouldn't be a fair brain teaser, it has nothing to do with the heart. It's Aseptic Viral Meningitis--it's a side effect of a medication. And it's too hot to sleep! Cleveland--90's with high humidity!

    Thanks again for the info! By the way, " PVC's are normally nothing to worry about"-yes, I agree. But "100's of PVC's are rare," Come to my unit and watch the telemetry--it's not rare on my unit!! (and of course they're being treated.)

    Dawn

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

    [Re: POTPOURRI]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-23-02 17:32

    Dawn - Do not be so hard on yourself your doing great! and thanks for helping educate the nurses on your floor! While I agree that 100's of PVC occure in many people it is normally at that point they are seeking treatment as you noted. My point is that an occational PVC is not a reason to panic, it just feels "funny" and freaks you out a bit! (a great deal of personnal experience on this one!)

    Re ICD's talk to your moms doc and he will help you sort out the details of your moms case to help evaluate the ICD issue.

    Keep up the great work!

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

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