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Lab Rat Find out more about Lab Rat
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  • Hello

    First of all, this site is quite impressive. I want to thank and congratulate everyone involved.

    My seventeen year old brother collapsed and died earler this year. The post mortem examination revealed that he succumbed to hypertrophic cardiomyopathy. I had never heard of the disease, and his death came as a completely unexpected shock. I have since done some research and now understand that there were some warning signs, but unfortunately, the local medical community tended to be somewhat imcompetent when it came to dealing with a potential HCM patient.

    I have had episodes of heart palpitation and light headedness in my life, but it was reading about the autosomal dominant mode of inheritance that convinced me to be screened. I won't bore you with the details, but I had to deal with a lot of ignorance and imcompetence before my persistent questions and pushiness resulted in a referal to a cardiologist. My echocardiogram revealed mild pulmonary hypertension and slightly stiff ventricular walls that don't relax properly during diastole. However, no thickening of the muscle is apparent, so no HCM diagnosis has been made. EKG and Holtor monitor results appear normal. I have been told to avoid competitive sports and weight lifting (OUCH!) while returning for annual exams and echocardiograms. I have also been referred to a specialist who knows more about HCM, but I haven't heard anything from his office yet.

    The anger and grief are beginning to give way to worry and fear. I don't know just how concerned I should be, but I have been having occasional panic attacks. I am in my early twenties and would like to attend graduate school, but I feel stuck in a job I despise due to concerns about health insurance. My parents refuse to be screened although I keep trying to convince them via telephone and e-mail. I guess I'm just seeking some understanding voices.

  • #2
    Re: Hello

    Welcome to the sight, you will find the people on this sight great, and answer any questions you might have, i'm really sorry to here about your brother, but one good thing happened with your brother dying it made you aware of the disease, and you got checked, keep us informed of anything you find out

    Take Care
    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

    Comment


    • #3
      Re: Hello

      Hi and welcome. Yep, you've come to the right place for people to talk with who understand where you're coming from and what you're feeling. I'm so very sorry about your brother. I know you must miss him terribly. You're certainly on the right track by getting yourself screened. Your parents and other siblings should be screened too, but remember that all you can do is to educate them. You can't hold their hands and make them go.

      Keep an eye on yourself and get screened again later. Most cases of HCM will show up by early twenties, but not all.

      Call Lisa at 973-983-7429 and she will help you out with figuring out what is going on. It's not abnormal to be scared and have anxiety attacks. Many here have felt like that too. Also, Lisa can send out information packets on what HCM actually is and lots of other good-to-know stuff about it to both your parents and to your doctor. It helps to have informed people around you.

      If you have any questions we're here for you. Feel free to post any time, regardless of the topic.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Hello

        Welcome!

        I'm glad you found us. And I'm very sorry about your brother. Your parents are probably still in shock. They will probably come around. You can also order a book from the HCMA on HCM that answers a lot of questions and is a good overview.

        See if your parents will talk to Lisa and/or other parents who have lost a child to HCM --the HCMA can do that if they don't want to go on-line. It makes a world of difference to talk to someone who knows exactly what they are going through. It may not get them screened, but it could still help them a lot.

        As for you, I'm very glad you are pursuing a specialist. HCM is a very complicated disease that varies from person to person. Some people never even know they have it and others need a new heart! And then there is your brother's situation, which is sadly much too common for something that is often preventable (heart screenings for student athletes).

        That being said, the VAST majority of HCMers live a full life span. And, just because your brother died suddenly, doesn't mean that you will or that you even have any risk factors (some experts say you need more than one family member to die suddenly for it to be a true risk factor).

        This is why seeing a specialist is so important. They have seen a wide variety of HCM and can do a proper sudden death risk evaluation, not to mention see that you get the treatment appropriate to your HCM and not what they've read in medical school.

        I lost my dad a few years ago, so just know that the first year is the worst. You will always miss your brother, but it does get easier as time goes by.

        Oh, and the panic---understandable considering everything that has happened. Seeing the specialist should help, and be sure to talk to him about your fears and the panic so -if you need medication for it- you get something that won't aggrevate your heart. Seeing a therapist (or hanging out here a lot) may help you during this time, too.

        As for health insurance, you haven't been diagnosed yet, so take out life, health, and disability --as much as you can-- asap. Before you see the specialist, just in case. A diagnosis of HCM makes you an automatic "decline" for all of the above except for group health and catastrophic health insurance (for if you got hit by a truck or something).

        Don't be afraid of going to school ---most colleges have a group health plan for their students. Call the schools you are looking at to make sure, but I'm pretty sure they all have them.

        You should also know that as long as you had uninterrupted coverage for 12 months prior, you can't be denied coverage for preexisting conditions when changing to a new plan.

        hang in there and keep us posted,

        sarah

        Comment


        • #5
          Re: Hello

          Sarah that was a great reply to lab rat,my mind went blank, as i also have a lot on my mind lately, just wrote a 4 page letter to dr. Gilligan, starting from the beginning, from birth, you know i'm surprized i made it this far with know ing what i know now and all the crazy things i've done in my life, somebody was sure watching over me, i even ran track in school, and was a gymnast, the reason i say it was from birth was that my father now tells me i passed out at least 4 to 6 times a month from the time i was a few days old until i was 5 years old. he said my mother had me to doctor after doctor and test after test, the only thing that was found was i had a slightly enlarged heart and a murmmer, but i was never told about this until i was diagnosed with HOCM, when i stopped passing out, the doctor told my mother, it could return when i get older. thank god i haven't passed out as an adult, came close a few times, blacking out and so forth, here lately i have had a lot of dizzy spells, sometimes just sitting, it's getting to the point i have trouble walking, i will get very winded, and dizzy,arms and legs and chest aches really bad, to the point i have to sit and catch my breath . cross your fingers they don't find much going on in my heart. I think the stress i've had with the new baby in the family, and my niece being so sick and hearing it in her mothers vioce, it worries me, maybe next month will be better, i keep telling myself that lately, trying to enjoy my grandkids this weekend i have 4 of them, 3 grandsons 9, 7, 3 and 1 granddaughter 3 rotten to the core, and i have to admit it's my fault, well enough of my rambling i need to move around a little going numb sitting here
          Take Care
          Enjoy your Sunday
          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment


          • #6
            Re: Hello

            Thank you for the responses.

            Regarding student athlete screenings: it makes it far more painful to know my brother's death might have been prevented. A murmur was discovered when he was fourteen, but after an echocardiogram, his doctor told him there was nothing to worry about. The murmur was heard again during a routine sports physical a couple months before his death. His doctor cleared him to play, saying there was probably nothing to worry about and that another echocardiogram could be done soon. Unfortunately, this was never carried out. I also remember conversations I had with my brother when we compared stories of palpitations and near blackouts following physical exertion. We both assumed these were simply occasions when we had pushed too hard and never took them seriously. I am doing my best to stop playing the blame game, but it is still very haunting.

            Regarding family screening: I have no other siblings. My parents do know other individuals who lost children to HCM, but they continue to refuse screening--partially out of guilt. I've explained the nature of disease to them and they seem to understand; however, they blame themselves for what happened to my brother. They keep saying a disgnosis of HCM would only add to that. I try to be sympathetic, knowing that the grief must be harder for them than it is for me. Regardless, I must confess to ocassionally becoming angry about such irrational statements. In addition, I was somewhat estranged from my parents prior to my brother's death, so I sometimes think they are hesitant to listen to me.

            Regarding health insurance: this is something that is new to me. Prior to the last few months, I had not been to a doctor for anything but routine physicals in over ten years, so I tended to take good health for granted. I was covered by the university's group plan during my undergraduate years, and I am now covered under the group plan at work. So, I've never had to actively pursue information about insurance before. I would prefer to have insurance independent of any particular employer or educational institution, but the expense is a concern. The plan I'm currently on will cover my visit to the specialist, but I don't now if other plans will do this. It's a huge mess, and I need to do more research. In any case, thank you for the information.

            Comment


            • #7
              Re: Hello

              Hi,

              Well, insurance is the easy part. First, Lisa, the HCMA president has been an HR director for a long time and you can e-mail her with specific questions --but be aware she is very busy and may take a little while to get back to you. Second, personally owned health insurance, even if you are perfectly healthy, is ridiculously expensive and you should seriously consider just making sure you move from one group plan to another without any gaps in coverage. And make sure you choose a PPO whenever you can (costs more, but still waaaay cheaper than doing it alone and it makes a world of difference in your ease of getting care).

              Your parents will need to deal with this in their own way. I would be angry, too, anyone would. Perhaps in time they will change their minds, but it sounds like if you keep at them about it, it could drive an even greater wedge between you all.

              Your brother's story is not unique in any way. This won't make you feel better, but at least try not to rip yourself up about what you did or didn't do. You made the best decisions you could with the information you had. Honestly, many people here thought that their heart problems were normal b/c they had no way of knowing what was normal. You can't fault yourself for that.

              take care,

              s

              Comment


              • #8
                Re: Hello

                Have you seen www.ehealthinsurance.com for quotes? Be sure to check on the lifetime cap of coverage. Since you are young, you want this to be high. I racked up 70K in one year. Be prepared to pay all of your deductible in one year, too. Some of them are very high.

                take care,

                s

                Comment


                • #9
                  Re: Hello

                  So-called panic attacks can be a physical manifestation of HCM. I've had them for years.

                  There was a very good discussion about this on the board back around July. Go up to the top of the page and hit "search" and then search for "panic attacks." The thread I'm talking about was called "HCM, anxiety and panic --is there a correlation?"

                  I do hope your parents come around -- the results of their diagnoses could be very important to your own situation. Meanwhile, seeing a specialist is critically important. HCM is sometimes hard to diagnose and there is a LOT of ignorance about HCM in the medical community, as you seem to be finding out.

                  Good luck.

                  Bill

                  Comment


                  • #10
                    Re: Hello

                    What a wonderful welcome our new friend has recieved, I thank you all for giving such wonderful advice...again I am struck by the caring shown on this board!

                    Anyway.... Welcome to the site "lab Rat", I guess we have all felt that way from time to time. I am very sorry to hear of the death of your brother, having lost a sister I can understand many feelings you may be having. I would like to comment on one area that you brought up (and mom if you are reading...do not read into this )

                    Parents have to deal with a great many emotions in the event a child has died, it is complicated even moreso when the reason for the death COULD have been known and COULD have meant that it COULD have been prevented. They need time, healing, anger, some more time, and about 1000 other emotions to process before they can be "at peace" with what has happened, some people get there in an amazingly short period of time...others never get there. I have often used the example of the "Miss Manners" books of ediquate... there are no "rules" in dealing with death, there is not a right or wrong way...it just happens. I am sure you know this to some extent, I am not simply posting this for you, it is for all those who read the board.

                    Lets get back to the word COULD, it is a hard word to deal with and an easy one to be angry with at this point. I know that had my sister recieved information on ALL here treatment options she COULD be alive today. Could is the past....what next is the future.

                    What NEXT... You are on a great path, sometimes a long one, sometimes a complicated on but all in all the correct path. I will be in the office on Tuesday if you want to talk about this "one on one", I can also assist you with the contact information on a number of specialists.

                    I wish you good health and peace,

                    Lisa Salberg
                    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)

                    Comment

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