If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • General Help

    [General Help]

    Author: Ken (---.prem.tmns.net.au)

    Date: 05-01-02 11:08

    I was diagnosed with HOCM 3 years ago when running. I am a Police Officer on the Gold Coast, Australia and have been placed off the road as a result as I am very symptomatic. I am about to have alcohol ablation therapy performed on me on July 4 this year in Germany by a Dr. Seggweiss, who apparently is a world leader in this treatment. Does smoking affect this condition? How muich does stress affect this condition? I have not received any support from work but only greif and I think this affects my condition. Is this alcohol therapy a good thing in your opinion or not, what are your opinions of the stat's on it's success, are there any other options for me, What is MAZE? Does drinking alot of alcohol affect this condition? Should I keep hydrated as I am lead to believe?

    Hope you can help, sorry about all these Q's,

    Thanks

    Kenny

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    [Re: General Help]

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

    Date: 05-01-02 12:26

    Dear Kenny

    Welcome to the board. Stress is definitely a component that doesn't help. If there is anyone in human resources that you can talk to about the grief you are getting, I recommend it highly. Everyone is different and there is no rule or statistic on x amount of stress equals this amount of damge. But extreme stress can feel like a heart attack (personal experience). You should do whatever you can to reduce major stress factors.

    Smoking reduces your lungs ability to get oxygen into your system and having the poor circulation that HCM patients have already sets you back. So you get a double-whammy of oxygen deprivation. Not to mention an increased risk of stroke. This is not even taking into account the cancer and emphasema that you can get from cigarettes alone.

    There are three threads on this message board that cover some of your questions (there are probably a few mor, but these are the ones that stick out in my mind). "Dehydration," "Wine and Fast heartbeat," and "HOCM and alcohol ablation" are the titles of the threads I suggest you read for excellent discussions of your questions about water, wine, and alcohol. (in a nutshel: Yes, No, so-so).

    From postings here and other things I've read, most only do the MAZE on structurally normal hearts, not HCM. But here is afibsurgery.org's definition of it:

    The Maze Procedure is a surgical procedure that cures atrial fibrillation by interrupting the electrical impulses that cause the abnormal heart rhythm. The surgery involves the placement of incisions in both atria. When the incisions heal, scar tissue forms and prevents the abnormal electrical impulses from passing through the heart. Simple in concept, the Maze Procedure works essentially by creating blocks that the electrical impulses can not cross. In so doing, it corrects all the major problems associated with atrial fibrillation: it stops the atrial arrhythmia, it restores normal rhythm between the atria and the ventricles, and it preserves the ability of the atria to contract on its own.

    As for the alcohol ablation, here is a link to one doctor's findings: http://www.cardiology.utmb.edu/slide...OCM/sld057.htm

    Many people have successful ablations. The key is being evaluated properly. Some people have had to have them repeated. It sounds like you are seeing an expert, which is great. If you want a second opinion, then you certainly should get one.

    I hope this answers a few questions. I will try to get hard stats on ablations for you, but in the meantime, please read those message board threads I listed above.

    take care,

    sarah

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    [Re: General Help]

    Author: Shannon Santagate (---.CLSP.splitrock.net)

    Date: 05-03-02 18:59

    Hi Kenny.

    I hope you will see this message as I am responding kind of late. I just wanted to give you my two cents.

    I am at home right now recouping from my alcohol ablation. I had it done by Dr. William Spencer in Houston on April 24th. It was very much a success and I feel like a new person! My gradient pressure was at 110 and they got it down to 30. I was hoping for a zero gradient but was told they usually can't get it down to zero if it is above 100 to start with. They told me to come home (to Colorado) and do nothing for two weeks and I'm going crazy! It has been a week and two days and I feel like nothing ever happened to me (aside from a sore right groin area where they inserted the catheters.)

    In my opinion this is a GREAT procedure and a gift from God. My brother had it 5 years ago, my niece 4 years ago, and the husband of a friend who I met on this website had it done earlier this year. All were successful. My brother did have to have it a second time because they couldn't get it all the first. But the second time his gradient was brought down to zero. I know that there is some doubt about this procedure on this website and I'm really not sure why. I have heard almost all good things about it and my family's experience with it is obviously fantastic!

    I wish you all the best and you are welcome to e-mail me personally at [email protected] (now) or [email protected] (after 8May when I go back to work.

    Take care and good luck!

    Shannon

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    [Re: General Help]

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

    Date: 05-03-02 21:56

    Dear Shannon

    I'm so glad you and your family have had such a great experience. It really makes a difference when you have the right doctors who know what they are doing.

    I moderate another board for heart problems at iVillage.com and I have someone who is going in for an ablation and wants to know what to expect in terms of recovery time. Can I put her in contact with you?

    Congrats!

    Sarah

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    [new HCM in Colo]

    Author: Dee Rawson (---.centura.org)

    Date: 05-08-02 17:57

    Dear Shannon: I also live in Colorado (Colorado Springs). I am a 56 year old woman and I am new to this disease, just being diagnosed in March of this year. I don't know many of the terms and treatments everyone is talking about on the message board on the hcma website where I got your address. I feel pretty good and can do almost anything but am constantly aware that something is wrong with my heart from the sensations I feel (mild pain, twinges, flutters, irregular heartbeat, dizziness, etc.) I have only been to the cardiologist twice so far. The frist time was when they discovered my disease and the Dr. told me my heart was only operating at 20-30%. I assume this is what everyone refers to as EF? I had a heart cath to rule out artery disease and thank God all my arteries were clear however I do have high blood pressure. So I am presently taking 10 mg of altace and 100 mg of Toprol XL. I also have thryoid disease so take synthroid and because of my age, hormones. My biggest fear is sudden death (mostly because of all the reading I've done about this disease). Do I even have a chance of making it to 70? So, how old are you and how long have you had this disease and what is the procedure you had and what is it for? I would love to hear from you. Do you have a good Dr.? My cardiologist seems o.k. but I'm not sure how much he knows about HCM. He wasn't very verbal in giving me a lot of information and since this was all greek to me, I didn't know what to ask. Please reply....Thanks, Dee

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

    [Re: new HCM in Colo]

    Author: s. beckley -moderator (---.dsl.mindspring.com)

    Date: 05-09-02 08:41

    Dear Dee,

    Welcome to the board. If you call the HCMA office at 973-983-7429, you can get the name of a doctor who knows HCM and also buy a very good book on HCM that explains just about everything you need to know in everyday English written by the medical advisor to the HCMA (Dr. Maron) and Lisa, the president of the HCMA.

    Also, if you joint the HCMA, they can hook you up with other people in your area that have it, too, who want to talk/meet with other HCM patients.

    You most certainly have an excellent chance of living your full life expectancy, assuming you get proper treatment, eat right and take your medication.

    The ablation procedure being talked about here is when they run a catheter up into the heart and kill (ablate) parts of the heart muscle to prevent it from creating irregular heart beats anymore. If you are a qualified candidate, having an ablation done by an expert, it has a high success rate. However, there are risks and you have to be a good candidate. I'm not a candidate b/c my heart never beats wrong the same way twice. So they could do an ablation and fix 1 arrhythmia, but I'd still have these others.

    It is very important to see an HCM specialist so you can be properly evaluated for any risk of sudden death, too. If you have ever had ventricular tachycardia, a heart attack, early sudden death in the family, and a couple other things I can't remember off the top of my head, those are the risk factors for sudden death ---and you have to have more than 2 to be considered at risk. Even if there is a history of sudden death in your family, you can get an implantable defibrillator that will reverse any attempts by your heart to head south.

    I hope my long post eases some of your concerns and don't forget to call the office, whether you join or not.

    Sarah

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    [Re: new HCM in Colo]

    Author: Shannon Santagate (---.galileo.com)

    Date: 05-09-02 09:45

    Hi Dee.

    After my 3 weeks off I'm getting caught up on reading the posts on this website. I don't use my internet at home much -- just at work!

    I see that Sarah told you about the ablation. It basically reduces the thickness in the heart muscle and allows the blood to flow through more efficiently. Since having it done on the 24th of March I have had no major palpatations, no more dizziness, and no breathlessness! It's a huge, wonderful change from before the procedure.

    I am 34 years old and have known I had this disease since age 4. I was checked because of family history of HCM. I had no symptoms at all until about 1996. Here in Colorado Springs I see Dr. Deborah Jalowiec at Penrose Community. She is a really good cardiologist but not an HCM expert. She is really great about finding info for me and was very supportive of my going to Houston for the ablation. As far as I know there is no HCM "expert" in Colorado Springs but I'm pretty sure there is in Denver. The HCMA office (Lisa or Sarah) would probably have more info on that. Where in Colorado Springs do you live -- maybe we're neighbors!

    You are totally welcome to comtact me directly (and Sarah, you can put that other person in touch with me as well) at [email protected]. This is my work e-mail address and I check it MUCH more often than at home.

    Talk to you soon.

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

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