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  • i'm really scared... please answer!! :)

    hi everyone - i'm 29. my dad died of HCM sudden death. i have been having heart murmers for three years and also get tired sometimes when i go up stairs or get really nervous. my hearbeat seems louder than it should when i'm just lying down.

    my doctor says it's just normal but he didn't know that HCM was hereditary!!! I didn't know until just yesterday when I had a REALLY SCARY spasm-thingy in my heart that made me feel like I was going to die. Now I've made an appointment to see a cardiologist and get an echo but I'm afraid for the worst - that I won't even last until theN!

    could somebody tell me how worried I should be about sudden death? I'm horrified and can't concentrate on anything outside my body for more than a minute. and my appointment's not for two weeks.

    any help u could provide would be SOOOO APPRECIATED!!!! thank u. michael glatze

  • #2
    Re: i'm really scared... please answer!!

    dear michael,

    i'm very sorry to hear about your dad. i've lost mine too, so i know how you feel.

    your worries are normal but you should know that the vast majority of HCMers live a full life span.

    there is a ton of info in the boards about sudden death --use the search function to bring it up. i would rewrite all the risk factors here but i'm late for work.

    the most important thing you need to do is get yourself to an HCM specialist. a cardiologist doesn't necessarily have a clue.

    please call the office or take a look at the links pages for help finding a doctor.

    also, if they determine that you are at risk for sudden death, you will get an ICD and that will protect you.

    take a deep breath and call the office.

    take care,

    s

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    • #3
      Re: i'm really scared... please answer!!

      Michael, I'm sorry you're going thru such a difficult time, I'm sorry for the loss of your father. That's hard enough to deal with without the worry of your own health. The pressure of everything can also be making your symptoms worse. I don't know if anyone else has ever experienced this, but when the appt gets closer, I stress a lot more also. It's such a big buildup waiting and wondering just what will be found and what will happen that it's hard to think of anything else. Take a few deep breaths and if things are really getting out of control for you before the appt, call your family doctor back just to get a bit more reassurance, anything to help you relax. If your symptoms become really bad, there is always the emergency room. As Sarah said, call the office and catch a bit more info on the message board. You will find you are not alone. Take care, keep us posted - Linda

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      • #4
        Re: i'm really scared... please answer!!

        Michael.
        We are all pulling for you! You are not alone with your feelings and worries. I am so sorry your dad died. Please get in touch with the HCMA office and speak to Lisa as soon as she returns. She will be able to give you tons of important information. Meanwhile, sit back, take a deep breath and vent here as you need to. Or if you need to talk, PM me with a way we can connect. I will be happy to lend a listening ear.

        Peace,

        Leon
        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness

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        • #5
          Re: i'm really scared... please answer!!

          you are all so kind and helpful. i am not really nervous about what might be found, because i'm ready to assume the worst - in order to (hopefully) be pleasantly surprised. and my dad died many years ago so i am beyond the grief of that. what i am HORRIFIED about is that I could die at any second from Sudden Death. my risk factors seem very high...(ie. parent died of it, I've had episodes of arrhythmia, had dizziness). except my blood pressure is normal and the doctor couldn't recognize anything just by the stethoscope and basic exam.

          i guess what would help is if there were any precedents - like what are some real warning signs of possible Sudden Death? - because I'm afraid that I won't last the two weeks i have to wait for my echocardiogram...

          i'm sorry if this sounds really obsessive but i'm scared and just really need some helping hands. thank u

          michael

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          • #6
            Re: i'm really scared... please answer!!

            If you search old messages you will find all of the risk factors for sudden death. Unfortunately, most of them can only be determined after a medical exam and tests. The only objective one that comes to mind is a history of fainting.

            You have made it this far, so its very unlikely that another couple of weeks will matter. If you experience a frightening episode, go straight to the emergency room.

            No matter what, you will be fine. The worst case scenario is that you get an ICD, which is no big deal. believe me. I have had one for a year and I am fine.
            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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            • #7
              Re: i'm really scared... please answer!!

              I'm sure your NOT GOING TO DIE.....You are just afraid of the unknown. Relax, take a deep breath. NOBODY knows when they are going to die and you shouldn't be afraid. I'm not sure if your interested or not but there's great books by George Anderson that may help you with your fear of death. If the doctors thought that you were on the verge of death do you think they would make you wait two weeks???? I know what it's like to be afraid. You need to learn ways to deal with your fears.
              Take Care and keep in touch!
              Tammy

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              • #8
                Re: i'm really scared... please answer!!

                I am often afraid I'm going to drop dead, too, and I don't have any risk factors. I'm teaching myself to chill out by meditating and focusing on other things (distracting myself) when I get that way.

                Not that I'm ignoring symptoms. I mean, if I'm having horrible chest pains or tachycardia or whatever, I get it checked out. But there are always the little bumps and jolts that aren't serious but can make you stop and think sometimes. I think we all go through this from time to time.

                We can't tell you from here what your recent symptoms are --you could be having totally benign tachycardia that just needs some medication --but we obviously can't tell from here --which is a shame, though. Would be easier, wouldn't it? ; )

                But, am I understanding that you are only just now going to a cardiologist? Many doctors think that young people can't have serious problems. They usually don't, but that doesn't mean you can't. I am not trying to make you worry more, but having a doctor tell me that arrythmias are "normal" would be enough for me to change doctors right then and there. I had a doctor tell me that a swollen kidney was normal (it isn't!). This is one of my biggest pet peeves in the whole world.

                Anyway, my point is that you MUST see a specialist and get evaluated for an ICD. Don't run or sprint, just walk briskly to the phone and call the office (973-983-7429) --or is it 983-973? I always get them confused. Sorry. it is on the membership page. The HCMA doesn't give referrals out on the board because they need to based on more info than should be shared in public.

                hang in there you're going to be around for a long time.

                s

                Comment


                • #9
                  Re: i'm really scared... please answer!!

                  Michael,

                  There's still a chance that you don't even have HCM at all, much less on the verge of sudden death. There could be a number of things causing your symptoms, and until you know for sure, I would try not to obsess about it. Even if you do have it, there's still no reason for you to be afraid. A very small percentage of HCM'ers are actually at risk from sudden death.

                  I lost my dad as well to a sudden death, and it freaks me out sometimes when i think about it. But like others have said, you've made it all these years without a hitch, and you'll make it through the next two weeks just fine. With the knowledge that you've gained already, you're way ahead of the game.

                  In the meantime, hang out here with us... we're pretty good company. Use the next two weeks to learn as much as you can from the board. If it turns out that you do not have HCM, you'll be well educated and able to assist other family members should the need arise.

                  Please let us know what you find out,

                  Jim
                  "Some days you're the dog... some days you're the hydrant."

                  Comment


                  • #10
                    Re: i'm really scared... please answer!!

                    Hi Mike,
                    I am going to die. There is no getting around it. I have a condition that has proven fatal for everyone who has ever contracted it. That condition? – Life!

                    OK, now that we have things in perspective, let’s address the issues. First, and probably the hardest, is don’t panic. Your brain is your best defense, and when you panic, your brain just doesn’t work at its’ best. If your complications get severe just head over to the ER, tell them your symptoms and that you have HCM with sudden death in your family history. You can get it addressed then and there – they CAN do echo’s in the hospital -right away if necessary.

                    Now that we have a safety net in place, let’s address the next issue. I suspect your doctor may not be the best one for HCM patients. He doesn’t seem to be particularly concerned with your symptoms – as evidenced by the two week delay before your echo, - and your obvious concern about your symptoms.

                    I would suggest calling the office to see if they can give you any leads to a good HCM specialist in your area. They would probably need more information then would be proper to post on the board. A problem here might be that Lisa won’t be back until after the fifteenth, and you might not wish to wait that long if no one else can help.

                    An alternative I would suggest would be to call the hospital, or stop by, and see if they have any cardiologists associated with the hospital who regularly treat HCM patients. You just might luck out there. If you find one, call their office, explain your symptoms, and ask for a second opinion – as quickly as they can schedule an appointment. (It would probably help to explain that you have a family history of sudden death, and are concerned that you might be on the brink.) It’s OK to use this as a lever to get a quick appointment. It is NOT OK to scare yourself with it.

                    When you see this doctor in operation you can then decide which doctor you would prefer continuing with, and make the appropriate arrangements then. I know all this is a hassle, but staying calm is your best defense. Just walk it through.

                    Hope my running off at the keyboard has given you some ideas on how to deal with your current situation. Please keep us informed of your progress. We’re a pretty tight community here, and expect you to be posting to the boards for many years to come.
                    Burt

                    Comment


                    • #11
                      Re: i'm really scared... please answer!!

                      Michael,

                      It is my understanding that you have not yet been diagnosed with HCM? You're getting a lot of very good information thrown at you, but try not to let it freak you out. Take this one step at a time, hang loose, and go have your echo in two weeks. Based on the results of that, you can make an informed decision as to what comes next, and what type of specialist, if any, that you may need to see. Lisa at the HCMA can help you out a great deal on that one. In the meantime, as Burt said, don't be afraid to stop by the ER if you feel you may be in trouble. At the very least, it will help set your mind at ease.

                      Jim
                      "Some days you're the dog... some days you're the hydrant."

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