Finally got the results of the genetic testing for my Long QT back... Turns out I do not have any gene abnormalities showing that the Long QT was inherited. (Still don't know why I have it.) I am shocked as I was pretty certain that this was the cause of my cardiac arrest but completely relieved because now I don’t have to worry about my daughter inheriting Long QT from me. So… my cardiologist says that my cardiac arrest was most likely caused by Idiopathic nonischemic dilated cardiomyopathy… after looking multiple words up I have a better understanding of what all of this means yet no real answer as to what actually caused my cardiac arrest. I’m sure quite a few of us go on never really knowing why things happened and I guess that is ok but sometimes I would just love a clear cut answer… So I will just go on living my life to the fullest and continue to be thankful that I have more good days than bad. - Brianne
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Idiopathic nonischemic dilated cardiomyopathy
- By Brianne
- Posted June 21, 2009 at 7:26 pm · 4 replies
- Shared with the public
Explore topics in this journal entry and replies:
Long QT syndrome Childbirth Angina Heart attack Cardiomyopathy
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- By Winglover
- Posted June 22, 2009 at 9:51 pm
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Brianne,
Yes. sometimes you never find out the "why" in life. My son was diagnosed with dialated cardiomyopathy last May. We were told it was from a virus but it was never identified. I hate not having the answers. All you can do is follow the medical plan, read, read, read and become knowledgeable about your condition. Ask questions. And like you said, live your life to the fullest. You will find a load of support on this site.
God Bless!
- By pambur
- Posted June 23, 2009 at 6:26 am
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Aged 21 I was diagnosed with idiopathic cardiomyopathy of unknown aetiology.... which only was a long way of saying they didn't know what was wrong.. ECG was mildy abnormal, but they couldn't find any reasons for it.
Age 34, in an attempt to prove to me there was nothing wrong, they did a cardiac catheter, and discovered I had a very rare, congenital abnormality, my left coronary artery arose in the pulmonary artery.. giving me a weird one way round circulation in my coronary arteries. I effectively didn't have a LCA. They said I should never have survived infancy.... never have survived childbirth. I had evidence of previous heart attack... and it was obvious I had been having angina all my life... only I didn't suspect that was why I was breathless so often, and nobody even thought of heart problems..
I am now 64, have survived 2 x CABG in 82, 95, and have 7 stents... and I honestly believe I would not be here now if I hadn't kept insisting "something" was wrong.
If you feel there is still something wrong, keep demanding they find out what it is.... \
hugz
Pam
- By hs
- Posted July 2, 2009 at 9:50 am
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Brianne, My understanding is that negative genetic testing result does not mean you are negative. Currently, 12 genes have been linked to Long QT Syndrome. Do you know for how many genes were you tested for? You can still have inherited Long QT if you have mutation in gene that was not covered in your genetic test, or in a gene that has not been found yet. That's why, there are many people who are genetically negative, but clinically positive. Fortunately, there is lot of research going on, so we will have more answers in future.
About dilated cardiomyopathy, it usually shows up on echocardiogram where one of your heart chambers is dilated. I hope that your cardiologist must have checked it out.
Good luck, and have a great long weekend!
- By MARYCORINNE
- Posted July 4, 2009 at 1:46 am
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I to have the same diagnosis (cardiomyopathy) and do not have a clue as to why. However my father died at age 54 of an enlarged heart and my biological brother had the same diagnosis 4 years prior to my diagnosis. At this point I don't really care about the "why" but more about the "what do we do next so I can improve?" Genetic testing is still in it's infancy and would just cost my insurance company valuable funds needed for proven treatment. So the question for my daughters is.... should they be concerned about heart desease? Hell yes. Should they watch their lifestyle, absolutely. Thats why I cook healthy and sign them up for any activity that gets their bodies moving. Enjoy each day and look to the future.
Happy 4th of July and CELEBRATE it's good to be alive !! MaryCorinne
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