Restrictive Cardiomyopathy in a City with a Population of 125 Thousand

29.6.12

Clearly I am brand new to blog culture and quite honestly, I still don't really "get it."
I do however enjoy it! The reasons why I started a blog are:
a) my friend told me a should because I talk to much about my dog
b) I have time on my hands and I am the type of gal who meets monkeys in random parking lots

The one piece of advice told to me about blogging is that consistency is key... oooops - I am a day late for my weekly blog post. But I woke up this morning, slapped my wrist and here I am.

The story behind the title for my blog:
I have a rare medical condition (yea yea...I know - just put away your mini-violin and keep reading)
I wasn't going to go "there" at all BUT the other day when my wife and I were talking, I changed my mind.

Texting and driving is bad. But what's worse - the following conversation I had with my wife while I was driving.
We are talking about my blog when my wife says I need to blog about the title. I explain to her that I don't want to go into things about my health and she says ... wait for it! ....
I MUST because people might misinterpret it and think that by "Big Heart" I mean kind person.
I'm thinking "uuuh yea that is in part why I picked it" and she goes on to explain that it's not a good title because it's not true  ... Uuuum what? She looks at my face (my super kind, natural, thoughtful, big hearted face of course!) and continues to dig her hole even deeper as I try to manoeuvre the vehicle while full of rage. She lost a few points that day.
 
So anyway - To be clear the title is not because I am a generous and giving person - I would hate to mislead you - it is because I have a rare heart condition, and I literally have a big heart. And since we are getting super technical about it - Sudbury Ontario isn't really THAT small. I just thought "Big Heart in a Small Town" had a better ring to it than "Restrictive Cardiomyopathy in a City with a Population of 125 Thousand"
What do you think?

3 comments:

  1. Firstly, I took "big heart" to be a double entendre. Meaning you have this medical condition, but more importantly because you're a big hearted super-kind person : ) Secondly, Sudbury IS small. Period.

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  2. haha
    you're smart. you should start a blog :D

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  3. Interestingly, I have the same condition. Restrictive cardiomyopathy means that the the septum (the part of the heart muscle -myocardium - the wall that separates the ventricles) is thicker than 12 mm.
    There may be other parts of the heart muscle that became enlargened, but the critical factor that identifies the condition is the stiffness of the heart muscle resulting in the inadeqate filling of the left ventricle that pumps the oxigen-rich blood into the body. The condition is also called diastolic heart failure because it is during the diastole that the ventricles get filled with blood. If you are younger that 65 you could get a heart transplant - the only cure to restrictive cardiomyopathy.
    Unfortunately, however, I am over 65.
    Much research is gone into the topic some of which is based on animal myocardium (in vitro).
    The suspect agents are amyloids, titins, etc. Amyloids can be treated at Mayo Rochester MN, but titins, etc. are hard to vectored (to get the necessary drug to the heart muscle).
    I even emailed quite a few MD's eminent in the field to attempt to vector the necessary drug to the myocardium through exclusive path to the myocardium - the two major coronary arteries.
    It seems though that no cardiologist is interested in committing to hazardous work.
    According to the director of NHLBI (of NIH):
    "The National Heart, Lung and Blood Institute (NHLBI) is interested in funding meritorious work related to diastolic heart failure and myocardial stiffness."
    "Once you have identified a potential mechanism and put together specific aims, please feel free to re-contact me and I will get you in touch with one of our project".
    Of course the research fellow would have to find a "Principal Investigator" (usually is a head of the cardiology at his institute with the rank of a full professor) through which the project could be financed by a grant. - I ran across 3 grants so far 1 mil, 10 mil, and a 12 mil each.

    But of course if you are more interested in your doggie than your own life than my findings are of no interest to you.

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