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mongo_jones Find out more about mongo_jones
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  • introduction

    hello everyone,

    i am a brand new registrant. i've been reading the posts on the boards here for a few hours now and this truly seems like a great, supportive, informative community and i'm glad i found it (thanks to cynaburst's post on a different board). i look forward to being here a lot from now on!

    here's my hcm history and then some questions (sorry for the long-windedness):

    i am a 33 year old male. i've had a generally unremarkable medical history and while i've never been very fit i hadn't ever noticed any particular problems or limitations that might have been cardiovascular related. 5 years ago a doctor told me i had a heart murmur but he didn't make a big deal out of it. 3 years ago another hmo doctor told me she couldn't hear it at all. last year i went in for a regular check-up and my new doctor, bless his old-school heart, said that i had a murmur and while it was probably nothing it was best to get a chest x-ray. sure enough the x-ray indicated left ventricular enlargement. an ecg was also abnormal and so i went in for an echo which showed maximal wall thickness of 34 mm (my cardiologist opined that in reality the maximal thickness was probably anywhere between 25 and 35 mm--but i'm not sure what this is based on) without obstruction. i didn't have any symptoms worth mentioning--though i do get tired when i exercise, then again i am not very fit anyway. nor did i have any family history of sudden death or personal history of arrythmias. regardless, due to the degree of hypertrophy an icd was recommended and in pretty short order i got one. the surgery was fine, i recovered quickly enough and this is where i'm at now. i'm on 50 mg of toprol a day (as a propylactic measure) and don't have any ill-effects from it. i go this week for my first echo since i had the icd put in. hopefully, the hypertrophy will not have increased. (my understanding is that the enlargement happens at some point and then stabilizes.)

    i've been seeing a cardiologist at usc university hospital in los angeles. i like my doctor but he isn't a specialist in hcm and there isn't anyone else there who is either. as a result, i don't know if i am armed with the best possible information. i've researched the condition extensively on my own online, and from what i can tell there is little to no specific predictability possible. as of now i have no obstruction, no symptoms, no sign of chf but there's no telling what the future may hold- correct?. the icd, hopefully, takes care of the sudden death possibility but indications also seem to be that people with hypertrophy of more than 30mm have lowered long-term outlooks (one study by spirito/maron seemed to indicate 50 years)--also correct? or has this connection changed recently? are there any statistics on what percentage of hcm people develop chf (with or without obstruction, connection to hypertrophy etc.) and so on? i should say my father likely has hcm as well (it was never diagnosed but an echo after my diagnosis revealed 1.5 mm thickness)--he's 62, an ex-fighter pilot and has never had any issues, but once again i realize this has no predictive good news for me.

    if i can ask one more thing: what are the numbers, measurements etc. that any hcm patient should have readily at hand?

    once again, i'm really glad to be a member of this community. i'm sorry for hitting you all with such a long first post and so many questions upon introduction but i do look forward to your replies and any information you can share with me.

    cheers!

    mongo

  • #2
    Re: introduction

    Dear Mongo,

    Welcome! FIrst of all, give the office a call tomorrow at 973-983-7429 and talk to Lisa about specialists. You are right to want to see one; it is very important and the major centers are used to coordinating your care with your local doctor, too.

    Your septal wall is a key number. You don't say which wall was "maximal" but I'm guessing that must have been the wall in question.

    I think Maron's 50 year old number was refering to only obstructed patients, which you don't seem to be.

    Most HCM patients live a full life span and CHF doesn't always happen. Even if it does, it can be very well controlled these days. Please search the message board archive for more info on CHF. You also need to understand that the CHF stats you read on the web are never referring to HCM-induced CHF unless it specifically says so.

    take care and keep us posted,

    S

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    • #3
      Re: introduction

      Mongo, you sound much like my husband and his HCM. There is a doctor who is near you. Please call Lisa at the phone # Sarah provided to see about contacting him.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Re: introduction

        Hey, Mongo!

        Glad you made it over here! If I had known you were in L.A. too, I would have had even more to say, because I am here too!!!

        I will also send you a private message....there are several docs here in L.A. with more expert knowledge about HCM than most.

        Talk to you soon,

        Cynthia
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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        • #5
          Re: introduction

          Mongo, welcome. You will be pleased with the amount of info you will have after talking to Lisa in the HCMA office. Be patient if she is a little difficult to get in touch with right now. She has a lot of projects going on right now, but she will get back to you if you call. You will have lots of input from our other members on the message board. Take care, Linda

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          • #6
            Re: introduction

            Welcome to our community!

            We are happy to have you (and cynaburst..thanks for helping him find us!). Re your measurements; It is a good idea to know your basic numbers - septal measurement, left free wall, left atria, and if obstructed your gradient. Why should you know these #...if you are in an emergency situation you can share it with the medical team, it helps them help you (also they tend not to see HCM often and they ge alarmed at #'s like ours )

            With your ICD and your meds it sounds like your on the right path. If we can help you with anything just let us know!

            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

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