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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
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
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?
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