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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  • Diagnosed with HCM

    [Diagnosed with HCM]

    Author: Diane C (---.proxy.aol.com)

    Date: 11-02-02 16:55

    I am 29 years old

    For the past 4 years I have had chest pain and tried to ignore it. I starting getting really bad chest pains and I finally went to see my PCP in January 2002 and she recommended I see a cardiologist. I lived in CA at the time. I went to see a cardiologist and had an Electro and an Echo and a Stress Test. I was diagnosed with HCM and as put on Antenlol 25mg and told to do VERY LIGHT Exercise. I took his diagnose very lightly because not knowing about it and I guess trying to deny that I had it.

    In July I moved to Nevada and started having lightheadedness, dizziness, and palpitations. The city Elevation in CA is 50 and in the city in NV is 4750. I called my cardiologist in CA and he said that it is probably the elevation and to see my PCP. I went to see my PCP and he said he did not know much about HCM and to see a cardiologist immediately.

    That week I seen a cardiologist and had an Electro, it said I had a heart attack and he was putting me on a halter and he was going to hold off and wait for my records to come in from CA and see what they show before any more action taken. He said that sometimes with this disease it would show a false/positive on the electro. I was still FREAKED OUT. In the meantime I was to take my blood pressure twice a day and my pulse twice a day. I seen him back in 2 weeks and he gave me another Electro and it still said I had a heart attack. He set me up for an Echo. I went in for my Echo and again not knowing a lot about my disease, freaked out again when he explained how serious it is. He told me that there is a flap in my heart which lets the blood flows in and when it is up it is touching my enlarged muscle. When I seen a picture and when he was telling me in more detail about the disease, All I could think about was I was going to die.

    He asked my about my children, and I had my daughter in for her 7 year check up and no sign of a murmur and I took my son in for his 4 year check up and he has a murmur. He said he wants him tested when he turns five, before he starts playing any sports actively. Or he wants to see him earlier if he starts showing any signs or symptoms.

    He told me to get on the internet and research more about HCM, so I am and that is how I found this website.

    If you have any response or more information please respond. Thank you in advance for any response or information.

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

    [Re: Diagnosed with HCM]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 11-02-02 19:07

    Dear Diane,

    I am so glad you found this web site! You'll find lots of others here who are figuring out how to live with HCM, too. It is a serious disease, yes, and one which requires us to pay attention to our bodies. Most people--especially as young as you are--can take their bodies for granted. We can't. And it's not safe for us to use denial--though it certainly is tempting some days!!! And most people with HCM have full and normal-length lives, so we don't need to be overwhelmed by our fears.

    Have you now gotten some control of the dizziness & lightheadedness? It be that your blood pressure drops at your new altitude and you need a medication adjustment. You also need to drink LOTS of water. Nevada has a very dry atmosphere (like Arizona where I live) and it is easy to get dehydrated without realizing it. Dehydration makes it hard for your heart to pump enough blood past that obstruction and contributes to our symptoms. When I say lots of water, I'm meaning something on the order of 2 to 4 liters a day. I make sure I keep my urine very light yellow; when it gets dark the kidneys are conserving water because the body is dehydrated.

    Then do what you can to gather more information and get the best care possible. Read the postings on this board--they have a whole lot of VERY good information in them. And read the rest of the web site. I joined HCMA and received a book (written by Barry Maron, MD, and Lisa Salberg, the HCMA president) which is invaluable to me when I need to refresh my understanding. And call the HCMA office for a referral to the closest cardiologist who has gotten extra education in HCM. It is a relatively uncommon disorder and you'll find those of us who have sought out HCM specialists are very glad we did. The HCMA phone is 973.983.7429.

    And last--but certainly not least--both your children and other first-degree relatives do need to be screened on a regular basis. There are often no symptoms of the disease and it is genetic, so it is very likely that you'll find others in your family who need to learn about it and how to take care of themselves, too.

    Take several deep breaths, Diane, drink some water, and start your journey with us. I'm sorry you've got HCM and found out in such a distressing way. And I'm glad you've found HCMA--you couldn't ask for a more informed and supportive group of friends than you'll find here! We'll help in every way we can!

    Pat

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

    [Re: Diagnosed with HCM]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-02-02 19:53

    Dear Diane

    Pat said just about everything I would say except to let you know VERY STRONGLY that the odds are that you will not die and that the old info about sudden death rates is too high. If you take care of yourself and see a specialist (call the office for a referral), you will probably live a very full, long life.

    try to rest easy and call the office first thing on Monday.

    Take care,

    Sarah

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

    [Re: Diagnosed with HCM]

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

    Date: 11-03-02 15:36

    Dear Diane,

    Pat and Sarah and both give me some very good advice. I know this is a scary time for you and your family please know that you're not alone.

    It is highly likely that went to your cardiologist is reading as a "heart attack" is not. It is extremely common for those with HCM to have extremely abnormal EKGs that mimic the appearance of a heart attack.

    If your son at age 4 has a heart murmur I would seek pediatric cardiologist and out as soon as possible and have an echocardiogram done to rule and out Hypertrophic Cardiomyopathy it is possible that his heart murmur has a completely innocent origin and is not cause for concern. However, HCM does strike at all ages and can be associated with life-threatening complications even in the youngest patients. Ask your pediatrician for referral to a pediatric cardiologist and make sure the pediatric cardiologist knows of your diagnosis. If you have any further questions please you not hesitate to posting here on the message board were e-mailed directly to the HCMA.

    Welcome to the board Diane I am glad that you found us.

    Sincerely,

    Lisa Salberg

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

    [Re: Diagnosed with HCM]

    Author: Diane C (---.proxy.aol.com)

    Date: 11-04-02 14:26

    Thank you for all the responses. I am gald to know that I am not the only person out there worrying about this diease and what it is going to do to my body and family.

    As soon as I am off the internet I will call HCMA and get a referral in the area. I am glad I found this website it has so much information on it.

    The lightheadedness and dizziness finally went away like the cardo told me. I am drinking alot of decaf ice tea, juice and water.

    Are there any limitations regarding eating certain foods, or drinks certain liquids? How about excercise, what do you do?( I am 230 pounds and would love to lose some weight, if possible)

    Thank again for the responses and future responses.

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

    [Re: Diagnosed with HCM]

    Author: Dolly W (---.proxy.aol.com)

    Date: 11-04-02 15:22

    Diane,

    I was told to stay away from grapefruit and grapefruit juice (not a problem) because it interferes with most cardiac meds. I also vaguely remember something about natural licorice or anise (Lisa/Sarah - any idea)? Of course salt should be used sparingly. Just keep an eye on the amount of juice you drink, not due to heart related issues, but due to calories. Like cola, you can really add up some calories with fruit juice, it's better to eat the fruit instead.

    I know how hard it is to keep the weight off, especially when we're not allowed to do much exercise, but walking is good. I've found that following a hypoglycemic diet (six small meals a day) helps me keep things in perspective.

    All the best to you

    Dolly W

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

    [Re: Diagnosed with HCM]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-04-02 16:02

    Dolly - While I can agree with most of your posting here is an interesting HCM issue...some of us must be on high salt diets! Yes that is right HIGH salt... those with lower B/P may benefit from higher salt intake.

    If you have trouble with heart failure,,, then salt is a no no!

    Just one more confusing issues to deal with!

    Lisa

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

    [Re: Diagnosed with HCM]

    Author: Diane C (---.proxy.aol.com)

    Date: 11-04-02 20:26

    Thanks Lisa and Dolly for your responses.

    I only drink 1 or 2 at the most glasses of juice aday. Dolly, do you know of a good website for the hypoglycemic diet?

    Thanks Lisa for the salt issue. My blood pressure is always low between 100-110/60-70 since I have been on the Atenolel 25 mg. I will definitely keep that in mind. My cardio says if he were to put me on a higher dose of Atenolel then I run the risk of passing out or have sudden death.

    Boy, do I love this website. Thanks.

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

    [Re: Diagnosed with HCM]

    Author: Dolly W (---.proxy.aol.com)

    Date: 11-04-02 21:25

    I stand corrected. How high of a salt diet are we talking about here? I love salt, but try to avoid it.

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

    [Re: Diagnosed with HCM]

    Author: faith (---.30.180.165.Dial.Boston1.Level3.net)

    Date: 11-05-02 08:29

    The word high may be the problem with the salt diet. I have to use salt when I cook and I can eat salty foods because of my hcm and low blood pressure. But at the same time, I have to keep up fluid intake. It's a matter of balancing fluids with me. My doctor said just to keep salt in my diet, not to go to a specifically high salt diet. I get the impression that everyone is different in this regard and it is best to ask your cardiologist about your special case, not to guess at treatments based on another person's treatment of symptoms.

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

    [Re: Diagnosed with HCM]

    Author: Diane C (---.proxy.aol.com)

    Date: 11-05-02 13:58

    Dolly thanks for the H Diet.

    I will definitely ask my cardio today about salt in take.

    Thanks for the all the responses.

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

    [Re: Diagnosed with HCM]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-09-02 15:55

    Hi all,

    There is usually so much extra salt in everything that we eat --especially fast food and frozen foods or prepared foods that you don't have to do anything special to eat "high salt"!

    As for foods, etc, Diane, avoid dark chocolate, caffiene, alcohol, tobacco, drugs, and there is some anecdotal evidence that a low carb diet works well and a lot of people with atrial fibrillation are reporting that low or no dairy is keeping them in rhythm. Also, cutting down on carbs and dairy will help you lose alot of weight. Also eat smaller meals more often and not big heavy meals.

    Yes, grapefruit interferes wtih beta-blockers (atenolol, etc).

    DON'T take over the counter medications that contain ephedrine, ephinephrine, or say "non-drowsy" formula. Those are stimulants.

    Take care,

    S

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

    [Re: Diagnosed with HCM]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 11-09-02 19:12

    The grapefruit and grapefruit juice warning is more often applied to calcium channel blockers. It interfers with absorption in the stomach. Allow several hours between the two and there should not be a problem. Metamucil, etc can absorb any meds so should be taken no less than 2 hours after meds or meds no less than 45 mins - one hr before metamucil. Linda

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

    [Re: Diagnosed with HCM]

    Author: Joy Stoops (---.25.236.81.Dial1.LasVegas1.Level3.net)

    Date: 11-20-02 11:43

    Dear Dianne

    Hi

    I live in Henderson , NV. I have a couple of names of good pediatric cardiologists who do know about HCM.

    My 9 year old son has it and was diagnosed at the age of 3. He is scheduled for surgery on the 3rd of Dec. Please e-mail me or call if you need anything.

    Joy Stoops

    [email protected]

    702-896-6856
    NOTE: This is a post from the previous forum message board.

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