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    [moved to fast]

    Author: Donna Benson (---.palmer.mtaonline.net)

    Date: 09-27-02 20:10

    Hi, my name is Donna. I am new to this web page. I have been going through the old messages. I have learned a lot. I may have jumpped in to having an ICD put in.

    Let me give you some background. Last December 1st. My younger brother passed away from HCM. He had no symptoms and had no idea that he had a heart problem. He was giving his son a bath when it happened. We were lucky that the baby got out of the tub by himself. They were home alone.

    After the shock of hving my younger brother passaway at the age of 39, We got another shock from the Medical Examener ( I am sure, I will have a lot more spelling goofs so please forgive me) that we all had to have an eco done. Well to make a long story short. I did not pass the test. Our other two sisters passed ok. I am a 41 year old mother of 3 and grandmother to a 1 year old boy. My cardiolagist said in order to make sure that I did not have a sudden death like my abrother I shooul have the ICD put in. This was only a few month after my brother passed. I was scared and said Yes. Now I am wondering if I needed to have it in or not. My septal/ LV posterior wall is 2.1 cm (thickness ratio). I am just copying numbers off a report that no one has explamed to me. I have a some other things that were out of the normel range. But I am in the Dark on a lot of this.

    Is there a doctor in Alaska that any on knows that may keep me better informed?

    I go back to my cardiolagist on the 16th of October. I have not seen him since the day after the ICD was put in. That was April 11, 2002. They never had my do any other tests but the holtor monitor. Can you give me questions to ask?

    Thanks for your help and just to let me blow off some steem. Once again let me say I am sorry about the spelling.



    [Re: moved to fast]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 09-27-02 20:41

    Donna, don't worry a bit about spelling. If that was a requirement of this board, all of us would be out at some time or another. First of all, I am so sorry to hear about your brother. I am happy the baby was ok. Let's see if we can help you with some questions.

    1. The # 2.1 cm is probably the thickness of your septum. The septum is the muscle that divides the heart into left and right halves. That is thick, but not unheard-of thick.

    2. Do you know any of the results from the holter monitor? Sometimes there are abnormal heart rhythms that you don't feel but that are picked up on the monitors. That might be part of why the doctor was quick to give you an ICD.

    3. Have you read the other posts about what criteria needs to be met in order to get an ICD? It is very imformative. Certainly your brother's sudden death is a key thing to consider when deciding whether or not you needed an ICD.

    4. Just because your septum isn't as thick as some others, that doesn't mean you will have less trouble with your heart. This disease is fickle and affects every person differently. Even within families. Several things to consider are these: septal thickness, arrhythmias (irregular heart rate), and obstruction (where the thickness blocks the normal function of the mitral valve). Hopefully your doctor took all these factors into consideration before suggesting you have an ICD.

    5. In order to find the nearest specialist, please call Lisa at the the HCMA at 973-983-7429. I know she will be glad to talk to you and will make you feel better.

    6. Know that you are in good company here on this board. This is a wonderful place for support. If you would also like to look at a board about people with ICD's, go to www.zaplife.org. They have ICD's, but not necessarily HCM.

    I know this is long, but I hope I have answered some of you questions. Please feel free to write on this board as often as you want. You're welcome here!


    [Re: moved to fast]

    Author: heather (---.fai.acsalaska.net)

    Date: 09-28-02 15:41

    Hello Donna,

    My husband was diagnosed with HOCM about two months ago, much to our surprise. We're up in Fairbanks. This website has indeed been a blessing to find. Definitely call Lisa at 973-983-7429 to learn who to see and what to do next. Alaska has no specialists, and a specialist is absolutely what is required in this situation.

    Finally, after a month of waiting, my husband had his first appointment here with a cardiologist yesterday. Basicly, we were told by the doctor that he didn't know enough about HOCM at this time to make a recommendation and that he would have to look into it more while we schedule another appointment, this one in Anchorage, for retests. Fortunately, he also promised to contact the specialists in Cleveland, and to talk with Dr. Compton in Anchorage, who is reputed to be an ICD specialist.

    Donna, please also give HCMA, or tell Lisa on the phone when you talk to her, the AK Heart Institute's ( http://www.alaskaheart.com/index.html ) physical address so that she can send them a info packet on HOCM. Perhaps when you see your next cardiologist there, they will be more informed and prepared that way to treat your condition. Or at least to explain what they are doing and why.

    Good luck and keep in touch.



    [Re: moved to fast]

    Author: SB -Board Moderator (---.dsl.chcgil.ameritech.net)

    Date: 09-28-02 20:29

    Dear Donna,

    As Reenie pointed out, there are 5 or so risk factors that are taken together to determine if you need an ICD. Having your brother go like that is a big one and there are fewer risks to having an ICD than not if sudden death runs in the family.

    My big worry is that you haven't seen the doctor ---are you getting your ICD interrogated every 3 months like you are supposed to?


    Dear Reenie,

    Wow, If I didn't read the name on that post I would have thought that _I_ wrote it!!! *grin*



    [Re: moved to fast]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 09-28-02 21:26


    I'm learning from the best!



    *.*(\ (_) /)*.

    .*.(_/ || \_).*



    [Re: moved to fast]

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

    Date: 09-28-02 23:50

    Hi Donna,

    Your situation is the same as mine.

    My brother was 37 when he died suddenly playing volleyball. He Had no idea he had any problems nor did I.

    The coroner also told all siblings to be checked and same as you I failed big time. My septum is 2.1 but I do not have an obstruction. They were to do a strss echo,,but after the initial echo they would not let me on the treadmill..Talk about freaking me out. And to boot I was a Jazzerice instructor. How I did not die on the stage teaching a class is a miracle in itself!

    I too have an ICD. Have had it for 3 years now and am glad I do. I only get checked every 6 months by my EP just to make sure all the leads etc and battery life are OK.

    I highly advise you visit zaplife.org as well as this wonderful site.

    It is a great site too and all of us there have ICD's. There is a chat on Thursday nights 8:00 EST that gives much needed support for those that like that kind of thing.

    Take care and good luck.



    [Re: moved to fast]

    Author: donna (---.palmer.mtaonline.net)

    Date: 09-29-02 20:12

    Thank you for all the help and information. I am so glad I found this site. It is nice to talk to people that have the same things going on in their family.

    Reenie, I don't know what the holter monitor test said. I have read the other theadeds about the ICD criteria. I guess I just don't like to think about all the stuff that is or can be wrong with me. Thank you for your answers and help.

    Heather, I live in Big Lake, Alaska. It is about 1 hour from Anchorage. Dr. Compton is the one that put in my ICD. He is a nice man and did a good job. He handles the inplantation and then hands you off to a nother dr. I have an appointment with Dr.Kramer on the 16th of this month. I have a lot of questions to ask him. Thank you for your answers and help. I hope your trip to Anchorage is a good one. my number is 907 892-8306. If you would like to call and talk some day or even meet, just call.

    Sarah, my ICD is being interrogated every 3 months. It is being done by the people from Medtroincs. I have a test unit, to see if it can get approved in the U.S. I will be getting another echo this next month, to see if my septum is getting any thicker. I will keep all of you posted. Thanks.

    Julie, I am sorry about your brother. I know how hard it is. I am glad you are ok and that you got your ICD. Have you gotten any treatment from it yet? I have not, and I am a little be scared about the first time. Thank you so very much for the web sites and the help.



    [Re: moved to fast]

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

    Date: 09-29-02 22:52

    Dear Donna,

    I hope that you don't still feel like you "jumped the gun" but that you have chosen wisely to protect your health in the most effective manner possible.

    take care and keep us posted,



    [Re: moved to fast]

    Author: Julie (---.cinci.rr.com)

    Date: 09-30-02 12:09


    Yes I have received 6 therapies so far. They are not the most pleasant thing in the world, but it is over very quickly. Luckily after my first one I now know when they are coming. My heart speeds up and flip flops and I have about 10 seconds to prepare myself. One time I was sitting a a red light...so I had time to pull over. I am also lucky that I feel fine after I get shocked and I have not passed out proir to the shock. My Dr has recently adjusted my meds a little and changed some of my ICD settings so hopefully I will be shock free for awhile. The last one I had was June 1st so almost 4 months now!!!

    Take care of yourself!!

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