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HCM of both left and right ventricals

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  • HCM of both left and right ventricals

    [HCM of both left and right ventricals]

    Author: wendy (---.proxy.aol.com)

    Date: 03-15-02 00:04

    My daughter Mikahla was diagnosed w/ HCM in October. Prior to this when she was born they told me that she had an abnormal heart- but that she was doing well clinically and that no treatment was warranted yet. Well, in October Mikahla had fallen into severe congestive heart failure. Previous to this she was not on any meds and was doing remarkably well. The docs always told me that at some point she may need a cath done to further define her problems. In October she had a pericardio centesis, and cath done. During the cath she had heart block. Very scary, when the docs told me that her heart stopped and that they had install a pacer wire . They took the wire out 2 days later and told me that they were confident that the block would not happen again-- that it was caused by disruption of the electrical paths.-- not that her heart was having irregular beats. So then they started her on meds-- Lasixs, enalapril, and Inderol. The docs told me that she was responding well to the meds and that the cath revealed that the HCM was affecting the right and left side. They have always told me that if it was just the left side that there are surgical options to help. But that if it affected both sides then meds and eventually transplant would be indicated. Does anyone out there have HCM of both sides? And if so what are the docs telling you. Mikahla is only 4 years old. The docs say that if you were to look at her EKG and look at her- you would think that she would be lying in a hospital somewhere. But in fact she is doing well, running around and pretty active- however at times she gets breathless, and has to settle down. Until I ran into this website I didn't know that my other family members including myself, should be tested. I was told it could be hereditary, but no cause for alarm. Well I'm sitting here and reading all of these messages and I am very alarmed that the docs have not suggested me and my family be tested. Especially in light of the fact that I had to miscarriages prior to Mikahla being born. This is very alarming in deed. Thanks in advance for your responses.

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

    [Re: HCM of both left and right ventricals]

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

    Date: 03-15-02 03:30

    Dear Wendy,

    I'm glad you found us, too. I'm so sorry about your daughter's situation. If you have any other children, they should be tested, as should you and your husband --and your siblings. All you need is an echo at first.

    My personal two cents is that Inderal sucks. It is one of the oldest beta-blockers out there and can cause very bad nightmares. My mom calls is "end-it-all" --that is how horrible it was for her. A friend of mine would wake up beating her sleep-mate with a pillow --thinking she was beating back the spiders in her nightmare.

    There are plenty of newer beta-blockers with fewer side effects. The fact that the doctors are giving her Inderal and that they didn't recommend immediate testing indicate that they may not really know HCM at all. Please call the HCMA office to find any HCMA experts that may be in your area.

    I truly hope that you get a second opinion and surgery is an option for Mikahla. Dilative cardiomyopathy is when the heart is thick all the way round--are they sure that she has HCM and not dilative?

    Please keep in touch,

    Sarah

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

    [Re: HCM of both left and right ventricals]

    Author: Glen (---.com)

    Date: 03-15-02 08:31

    Sarah, I almost fell out of my chair when you said Inderal sucks because of the side effects. I have been taking Inderal for 30 years now and I believe it probably saved or at least made the quality of my life quite good and I have never had the side effects you described, I guess back then Inderal was the med of choice as there was not much else.

    However Wendy, I do agree with Sarah that there are better beta-blockers available now and my cardiologist is now switching me to one. I just went thru a new series of tests after 10 years since the last ones and everything went well, but he did say the newer beta blockers are better and to have Inderal prescribed now days is unusual.

    Also I agree that your doctors may not be up on HCM as they should have immediately told you to get your family tested because there is a good chance up to half of them may have HCM.

    Did they do any ECHO testing??

    It almost sound like there is more or something other than HCM involved.

    Have you thought of a second/third opinion, I had to go thru 3 cardiologists before I found one that finally diagnosed me correctly.

    I wish your daughter and you all the best, sounds like you have a journey ahead of you, good luck. Let us know how you make out.

    Glen

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

    [Re: HCM of both left and right ventricals]

    Author: wendy (---.proxy.aol.com)

    Date: 03-19-02 22:32

    glen, Thanks so much for your response. It is nice to have people to talk w/ about HCM. I do think that the cardiologist have not had much expierence w/ HCM. The office that I take Mikahla to has 4 cardiologist all peds. They are in close connection w/ the heart surgeons, and every Tuesday they all meet and have a conference about the patients. They have told me that they have all discussed Mikahla's case and agree that she is surely a rare case. She has seen all 4 peds cardiologist in that office. I was feeling pretty good about their diagnosis. They did tell me that when they did the cath. that they couldn't do everything they wanted to do as far as testing as she had the heart block- so they had to stop. But they say they will continue to follow her closely. They say that they may need to do another cath. and also go in thru the throat and do an echo that way. Also a biopsy of heart tissue. I know that at times my daughter can not even jump around w/o getting chest pains and all sweaty. Going up the stairs is always hard for her.

    Again thanks for your input. I'll be sure to ask the cardiologist if Inderol is the best choice for Mikahla. She has not had many bad dreams that I am aware of. Maybe 1 since starting the meds.

    Keep in touch, Wendy

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

    [Re: HCM of both left and right ventricals]

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

    Date: 03-20-02 14:14

    Dear Wendy,

    I've had the "echo down the throat test" (transesophageal echocardiogram aka TEE) and they sound horrible, but as long as they give you enough medication to stop the gag reflex, it isn't bad. I recommend your daughter keep her eyes closed through it all since it is kinda scary to watch someone stick a hose down your throat. You should stay with her and suggest she pretend to nap or dream or whatever will distract her. I didn't watch and I'm 33!

    Don't forget to talk to the HCMA office about finding an HCM specialist in your area.

    Sarah

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

    [Re: HCM of both left and right ventricals]

    Author: Lisa (---.parnj1.netplay.net)

    Date: 04-02-02 09:10

    Hi its Lisa here...

    re the inderal - drugs effect each person very differently and it is hard to "compare" yourself to each other. It is important to remember that in children it is hard to detirmine if infact drugs are working. If the "levels" can be monitored it assist in treatment. Inderal is one of the few betablockers that levels can be detirmined, therefore it is often used in children. Nightmares/vivid dreaming can occure with many medications if you notice sleepless night talk to your doctor otherwise it should be fine.

    Re bi ventricular hypotrophy... I would prefer to discuss that on the phone so Wendy please call the office and set up an appointment. It is not that it is bad or anything It is just a great deal to type and I have limited time right now.

    best wishes,

    Lisa Salberg

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

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