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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    [Questions]

    Author: Susan (---.ceg.com)

    Date: 03-25-02 14:55

    Hi, I'm new to this message board and also to this condition called HCM. I've been reading this board every week and I have some questions. On one occasion you listed a Dr. Harry Lever @ Cleveland Clinic as being a specialist on HCM. I was referred to Cleveland Clinic to a Dr. Craig Asher about 9 months ago. He is treating me now and seems to know what he is talking about but after reading and researching I'm not so sure. I called Cleveland Clinic and was told Dr. Asher does treat patients with HCM along with Dr. Lever but he is not listed as a specialist in HCM on their website. Also, my cardiologist at home had done a holter reading and said I had a short, non-sustained reading of ventricular tachycardia. Dr. Asher agreed but neither seemed to be too worried about this. After reading some info on the message board I believe this is pretty serious. I am on 50mg of atenolol in the morning and I take another 12.5mg in the evening. This has improved my symptoms alot but I still sometimes get spells of pounding heart, tightness in my chest and running down my arm and increased heart rate. Usually my heart rate on the atenolol stays about 60-66 but during these episodes my heart rate increases to 84 which is not really that fast but it sure wears me out when this is happening. It will last between 45 minutes to 60 and after it goes away I will feel just fine again. Does this mean I am in ventricular tachycardio when this happens? I guess I just need to know what I should be asking my doctor and if I need to switch to another one. I was also told that my HCM is obstructed. Seems to me they said something about an 80 gradient. Does this make sense to anyone and how much of this stuff should I know myself? Can you help?

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

    [Re: Questions]

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

    Date: 03-25-02 23:50

    Dear Susan,

    Ventricular tachycardia can sometimes lead to ventricular fibrillation, which is usually fatal. What is your family history with HCM? Has anyone in your family died suddenly of a heart problem? You should ask your doctor if you should be evaluated for an implantable defibrillator. You should feel free to switch doctors at any time, even if you switch to Dr. Lever. What has Dr. Asher said about these episodes?

    Obstructed means that the blood flow out of the heart is partially blocked the thickened heart wall. This makes the heart less efficient. You should learn as much as you can about HCM, and there is alot. I've had this for 15 years and I still don't know everything, which is why I'm very glad you found the HCMA, as they are the best resource I know for this condition. Please consider joining or buying Lisa and Dr. Maron's book on living with HCM. There is a lot of info out there, not much of it in "English" as opposed to "Doctor."

    I can't say if you are having v tach or not, but if the atenolol isn't enough, then you need to have your medication and treatment re-evaluated.

    I hope this helps a little bit. The message board is a great place to start, and there are some super-knowledgable people here who will explain a lot.

    Please write back with more detail.

    take care,

    Sarah

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

    [Re: Questions]

    Author: Susan (---.ceg.com)

    Date: 03-26-02 09:29

    No one in my family was ever diagnosed with HCM. I did have an uncle that died suddenly of a heart attack but no autopsy was done. He was in his late 50"s. My father had a mitral valve repair at age 70 but even then no doctor ever mentioned him having this condition. My son has been tested (he's 26) and it did not show up. There are six siblings and only one has elected to be tested and she came up negative also. My doctor did have a consultation with another doctor at Cleveland Clinic and it was decided that I was not at a high risk for sudden death. Like I said both doctors did not seem to worried about the v tach. Next week when I go back to Cleveland I am going to really talk with the doc about all my questions. Hopefully I will be a little more knowledgable about my condition when I get back. I really do love this group and I did join right after I found out about this and I have read the book, but I feel I need to know more about my personal condition in regards to where my obstruction is and all that. Thanks for listening and responding.

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

    [Re: Questions]

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

    Date: 03-26-02 10:41

    Susan,

    I'm sure if you were evaluated at Cleveland Clinic, you received an echocardiogram. Did you request a copy? You are entitled to copies of reports for evey test you receive and I always do so. This also becomes a great advantage when you are referred to other physicians - you can bring the copies with you. I am always surprised that most people do not do this.

    The echocardiogram normally has a summary page which is not difficult to read, and should provide answers to many of your questions. A copy should have been sent to your local physician. These records are maintained indefinitely so you will be able to obtain them now just for the asking.

    Good Luck,

    Bob

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

    [Re: Questions]

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

    Date: 03-26-02 12:23

    Dear Susan,

    Knowledge about HCM is comparateively new. 10-15 years ago, I was constantly asked what my condition was secondary too (as in what caused it?) with the understanding that it was a childhood disease or something that did it. Some even refused to believe it was genetic. So I'm not surprised that the older generations didn't have anyone say "HCM" --it just didn't exist in medical terminology that way.

    I'm glad your son tested negative. It is a good idea for him to be tested on a regular basis, though, as some times it doesn't show up till even later.

    TIp for the doctors office: write down all of your questions before hand and bring the list to the office. Go down it point by point till you have had everything answered. Personally, I always forget at least 1 important thing at every visit without a list.

    Bob is right, you should have a copy of your echo, and you may want your blood work results too. PIcking the doctors brains and having all your records is the only way to learn all about YOU.

    Let usknow how it goes,

    sarah

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

    [Re: Questions]

    Author: Patricia wonderly (---.56.237.197.Dial1.Buffalo1.Level3.net)

    Date: 03-26-02 13:59

    Hi: I can't answer your question about V-tach. However, I have seen Dr. Lever at the CCF for HCM and he was terrific. Perhaps next time you visit Cleveland, you can ask to see him in addition to your regular cardiologist.

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

    [Re: Questions]

    Author: Glen (---.com)

    Date: 03-26-02 15:11

    Hi Susan, it sounds like both your uncle and father may have had HCM, but as Sarah says it was not referred to as HCM back then and has actually gone thru several name changes.

    My father also died of an apparent heart attack 33 years ago at the age of 43, but a couple years before that he was told he had an enlarged heart muscle and basically they did nothing because they knew nothing about HCM then

    Also the mitral valve can be affected by the thickened muscle and that is why some HCM patients have a murmur.

    I was diagnosed 30 years ago at age 22 and at that time it was really unknown and they referred to it as Muscular Sub Aortic Stenosous. HCM is a more recent term.

    The remainder of your 6 siblings should get tested as although they may not be having symptoms, they can still have HCM and they should know the severity if they do.

    I have had similar situatons as Sarah where medical people question what I have and have suggested it must have been scarlet fever when I was young that caused it. I never had scarlet fever. It was my 4th cardiologist that finally diagnosed me at the Toronto General Hosp/University where I have been part of a study group for 30 years now. So don't be afraid to question or change your cardiologist if your not getting what you feel are the correct answers.

    I am being switched to Atenolol next month, I have been taking Inderal for 30 years, but they don't prescribe that one anymore. I know Sarah doesn't like Inderal. The medications worked well for me and controlled my tachycardia, I hope the Atenolol works as well.

    Good suggestion by Sarah, make a list of questions for your visit, I know I have come out of a visit ticked off because I forgot to ask a question I was going to.

    Good luck Susan and stay well.

    Sarah, I have a question for you, you do a great job monitoring this message board, but I seem to be having a problem getting support to answer my e-mail. I am anxious to become a member and have sent a couple e-mails inquiring and do not get an answer, I have sent them to [email protected], is that correct??

    I sent one 2 weeks ago and another last week.

    Thanks for your help

    Glen

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

    [Re: Questions]

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

    Date: 03-26-02 20:04

    Dear Glen,

    I will let the HCMA office know this and find out if the address is working.

    HOWEVER, I do know that Lisa tries to answer every e-mail personally, that isn't an administration or organization question, and she is swamped with e-mail, so you could just be in line.

    Thanks for the compliment, too!!

    take care,

    Sarah

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

    [Re: Questions]

    Author: Susan (---.ceg.com)

    Date: 03-27-02 12:22

    Thanks for all the advice and I will ask for reports from Cleveland because the last time I went to my cardiologist here he had received nothing from Cleveland. They had to call and have them fax everything. Guess I should have seen the writing on the wall, that I am going to have to take care of ME. I think I was still in a state of confusion about all this. In answer to your remark about this being caused by scarlet fever, EVERY physician I have seen trying to diagnose this has asked me over and over again if I ever had scarlet fever or took any type of diet pills. I kept saying no and I even had one cardiologist spend about 30 minutes with me looking at yet another ECHO that was taken and told me it must be something with my lungs, it wasn't my heart. I had at least 5 echos done in the last 7 years and no one seen this at all! My family doctor did stress tests, echo and a electrocardiogram and told me that they were quote "not normal, but not abnormal". When I asked what that meant he said that many women my age ( then I was mid 40's) get this type of reading. Anyway, I'm just glad I persisted with him (once to the point of ticking him off, I think) and finally found out what this is. I will keep you posted after my visit next week. Thanks everyone for your replies.

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

    [Re: Questions]

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

    Date: 03-27-02 14:39

    Dear Susan,

    THere is a packet of info the HCMA has made up especially for doctors. If you give them the doctor's name and address, they'll send it.

    Also, I can't tell you how often I've heard that "oh, this is 'normal'" when being told that some organ is too big or too small or too whatever. Um, NO, I don't think so. It just makes me insane.

    It is criminal to me that doctors will pooh-pooh abnormal readings. One person on this board had dizzy spells and the doctor said, don't worry about it, but dont' drive --excuse me? Does that make any sense?

    Ok, my little rant is over. Sorry.

    I look forwared to hearing about your next visit. Kick some butt!!

    Sarah

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

    [Re: Questions]

    Author: NURSE NANCY (207.109.18.---)

    Date: 04-24-02 15:45

    YOU NEED A REFERRAL AND QUICK .. GO NOW TO THE CLEVELAND CLINIC
    NOTE: This is a post from the previous forum message board.

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