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What's the odds???

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Laoshur Find out more about Laoshur
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  • What's the odds???

    A week or so ago I got to thinking about the frequency of HCM. I was thinking that if the frequency is 1/500 then I should know quite a few people with the disease since I know a lot more than 500 people. Then I realized that the disease is not randomly distributed in the population because it occurs in family clusters. So, since my sister and I both have it, that would take care of two people out of 1000. At that time I started to ask on this board if there were any statistical analyses that would predict the probability of meeting a random person with HCM. The only reason I didn't write was because common sense took over and said that I really should not waste time on such a frivolous question when I needed to get my grades into the university and prepare to come home.

    So, fast forward to yesterday (or the day before if you count in crossing the date line). One of our fellow teachers came home on the same plane as we did. She lives upstairs from us and we know each other quite well. We met when she arrived to teach at our university in January of 2003. Shortly after we met we discovered that we had many things in common, not the least was that she lives near Louisville, where I grew up. We discussed families and in the process I learned that her family also had a history of sudden cardiac death. At that time I learned that one of her sisters has a defibrillator and that all her father's family had died by age 63, virtually all having dropped dead. When I got my HCM diagnosis a few months later I wondered whether her family could have HCM and I think I even mentioned that possibility to her. She mentioned to me a couple of weeks ago that the doctor that both of us go to in Beijing had told her that she had a heart murmur so she was having some tests. So, yesterday as we were in the airport in Beijing she told me that the doc had done an echo and that he said that there were some abnormalitites, but that her heart was basically fine because she had an injection fraction of 89%. I nearly hit the ceiling. I told her that that was not a positive sign and that I wondered whether she might have HCM. In Tokyo she pulled out her echo report and showed me. Among other things she has a septal thickness of 1.34 and a small gradient. What's the odds!!! It looks like HCM to me! She has an appointment on Tuesday that her husband set up for her because he had to leave a couple of weeks ago to go back because their basement had flooded. I am encouraging her to go to Cleveland Clinic and avoid the intermediate steps. She is 63, so the sense that this is when heart disease kicks in is really strong for her so she is really motivated to do whatever it takes to get it solved. I think she plans to call Lisa on Tuesday or Thursday of this coming week.

    So, there was my answer. The odds of meeting someone else turned out to be 100% in my case at least. My husband says that the university will never believe that this is not contagious and I did not give it to her!
    Rhoda

  • #2
    Re: What's the odds???

    Hi Rhonda
    Who knows??? Maybe you are related (generations back).
    I was first diagnosed with HCM (know as IHSS then) in 1973, I was told that I had a very rare heart disease. After viewing posts here, I know that I am not that rare. There are a lot more people (young and old) that have this horrible, mysterious disease.
    Knowing that your teacher has the same disease, you can answer some of her questions need be. That will be a big help to her. Maybe she should come to this site to learn. I certainly have learned a lot and I've only been a member a few months.
    Esther

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    • #3
      Re: What's the odds???

      I think we should all start singing, "It's a Small World After All!"


      Reenie
      Reenie

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

      Comment


      • #4
        Re: What's the odds???

        OK, I can beat this...

        My husband was engaged one time before to another woman who he wound up breaking up with. Guess what she had?? You got it....HCM. What do you think those odds are???? I guess he only likes people with a big heart.
        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.

        Comment


        • #5
          Re: What's the odds???

          I neglected to mention that there are only 6 Americans and two Canadians living in our building and teaching at our university! So, for Americans that is 1/3!

          Rhoda

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          • #6
            Re: What's the odds???

            Rhonda
            Now you got me thinking...not good...lol
            Maybe this question should be directed to Lisa. Does there seem to be more people diagnosed with HCM than say 10-20 years ago? Could it be because more and more physicians are becoming familiar with this disease and then can detect it sooner? Or is it spreading from one generation to another (maybe more children/grandchildren/cousins, etc.)are getting it more often now? I have told my nieces and nephews to keep an eye open for symptoms. All my brothers & sisters have been tested and so far they are negative. My daughter goes for another echo this week. In the past she was told she was negative, too. I keep praying that continues.
            Esther

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            • #7
              Re: What's the odds???

              Here is one for you - TRUE story.

              I was in the Orlando airport waiting for my husband and daughter to arrive. The flight was delayed and there were only 3 people in the terminal. Me and 2 older ladies. We started chatting, they asked me why I was in Orlando - AHA meeting I said. Are you a Dr? - No, I have a non profit orgainzation that helps people with a rare heart muscle disease. Then I was shocked! The one woman said "oh I have one of those, let me get the paper with the name on it....Oh here it is "HYPERTROPHIC OBSTRUCTIVE CARDIOMYOPATHY"!

              This is NOT a joke - Her name is Phyllis she lives in Fla for the winter and the Pittsburg area in the summer, and is now a member of the HCMA!!

              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)

              Comment


              • #8
                Re: What's the odds???

                I have to add my little tale of coincidences. My husband's brother's wife (sister-in-law) had a brother who passed away when he was a young teen and I had a brother who passed away at age 23 (12 years ago). We bother knew we had brothers who died, but we never asked each other why. When I was diagnosed with HCM nearly 2 years ago, my sister-in-law related that her brother passed away from HCM. Talk about a small world.

                Janet

                "Believe in the goodness of mankind."
                Believe in the goodness of mankind.

                Comment


                • #9
                  Re: What's the odds???

                  I've never really met anyone face to face that has hcm and growing up I felt soooo alone. I remeber as ateen looking around a cardio's office and seeing mostly older people and wondering does one of these people have it,hcm?
                  I remeber my mom telling me about my father whom died from hcm @ 30yrs old and that the doc's didn't know anything about hcm, they thought that he caught it in the navy, while on a ship he almost died, so later when I started feeling something different with my heart beating abnormaly and the doctors thinking what could it be, asthma-NO.
                  But anyway other than hcma I've never met anyone and I've only spoke to 2 people with it over the phone.
                  I really want to met others with hcm and share whats happened in our lives.
                  Jen

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                  • #10
                    Re: What's the odds???

                    I think the stories about meeting someone with HCM are amazing! I'm just excited every day to go on line & "chat" with someone who has my Disease! I would love to meet others with HCM (I know go to an annual meeting). This site alone is amazing to me.
                    Other than my Family members I know no one with HCM, I've never even met anyone (excluding my Dr) who has heard of HCM!
                    RONNIE

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                    • #11
                      Re: What's the odds???

                      Well now you have if you attended the meeting


                      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


                      • #12
                        Re: What's the odds???

                        My small world story, one of many, is that I was talking to a coworker about going to the meeting in June. I told her why I was going and she said her husband's brother had died suddenly from a "thick heart" disease while working on a semi. I asked if her husband had been screened and her answer: "Heavens no! He won't even think of it." I told her to at least get her kids screened because her youngest plays football and is 16. Don't know if she will, but I'll work it into conversation again soon.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Re: What's the odds???

                          What are the odds? If you’re in a crowd of 500 people, the odds are your it. If you go to a full 1,000 seat theatre the odds say somebody else will have HCM in the theatre also. But you know how odds really work. Somewhere there is a crowd of thousands of people and none of them have HCM, and somewhere else there is an elevator with ten people in it and they all have HCM.

                          If you went to the annual HCMA meeting you were one of an enormous percentage of people with HCM, while I could have been in a large casino and the only HCM’er there. To put it another way, you have a one fifth of one percent chance of meeting another HCM person with every person you meet. What fun.
                          Burt

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