I have been recently diagnosed with cardiomyopathy and I am only 29. I just wanted to know if anyone else has this disorder and what the treatment options are? Can I still exercise? Have a baby? Is my life over as I know it? I don't go back to the cardioligist until Wednesday. Since I found out I am afraid to move.
Please help me.
Thank you in advance.
Christina http://www.healthboards.com/ubb/wave.gif

GOOD LUCK WITH ANSWERS, I HAVE CONGESTIVE HEART FAILURE, AND WAS JUST TOLD THAT I HAD VIRAL CARDIOMYOPOTHY...TOLD BY THE NURSE AND PAC..MY DOCTOR WILL NOT DISCUSS HIS FINDINGS UNTIL 3-7-03...

NO ONE WILL ANSWER MY QUESTIONS EITHER...I AM 53 SO YOUR PROBLEMS DONT APPLY TO ME...BUT PLEASE KEEP POSTING UNTIL SOMEONE GIVES US THE ANSWERS........

MY NEIGHBOR WHO IS A NURSE WORKS 60 HOURS A WEEK, AND SHE HAS CARDIOMYOPOTHY...I HAVENT YET SEEN OR TALKED TO HER, BUT WILL, THERE ARE MANY DIFFERENT KINDS, WHAT WAS YOUR KIND(MINE IS VIRAL) LET ME KNOW AND WHEN I GET WITH HER I WILL ASK HER FOR US

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Hi Christina,
I´m 30 and was diagnosed with cardiomyopathy (the dilated form) last year.
DON´T BE AFRAID TO MOVE!
I´ve been going through some bad times since I learned about my disease, but it is possible to handle it and to live a happy and good life.
There are different stadiums of the disease, classified in NYHA (New York Health Association) I - IV. Stadium IV is the worst stadium. It depends on your normal constitution and on the stadium you´re in, how much you can exercise. It is important to do things like jogging or walking or biking because it will help you and your body (and your heart) to remain strong and in a good constitution. But no matter what you are doing, you must be able to talk while you´re exercising, you MUST NOT COME OUT OF BREATH, this can be dangerous.
I don´t know what kind your cardiomyopathy is, there are kinds which are reversible and others which are not. My doc told me that a third of the cardiomyopathies is reversible, a third becomes worse and worse and a third becomes better and will then remain in a certain stadium.
They treat the disease with medication and it is important to take the medication regularly. Best thing would be to see the cardiologist every three months to make sure nothing happened.
Your life will change a little bit, but don´t be afraid, not everything thats new is supposed to be bad. Perhaps you´ll see some new possibilities in your life you wouldn´t have seen before. When I was dignosed with this I also thoght my life was over and I was depressed but let me tell you I´m leading a good life and I´m happy... Except one thing.
You asked about having a baby. This was one of the first questions I asked. I´m not allowed to become pregnant. Having dilated cardiomyopathy means to have an enlarged heart. Since the heart is too big, the body cannot bear a pregnancy because the heart needs too much space. Having a baby under my heart would be a big risk for me and the baby. Another point is that a pregnancy means a big effort for the heart and it could be that my heart is too weak to handle it. And there is the medication which can be dangerous for the baby.
But ask your doc about it, don´t be afraid talk about this. If your stadium is better than mine it is possible probably.
I know it is difficult to deal with all this and sometimes I think I can´t bear it anymore, but perhaps it helps you to talk to someone in the same stuation...
Take care!
Mel

Hi Mel,
Thank you for your reponse.I really appreciate you sharing your story with me. It helps hearing I am not alone. I went back to the cardioligist yesterday and they put me on two medications. I can feel the difference already in my heart rate. Now I am just afraid I will not be able to get off these meds and I will have to take them for the rest of my life. I guess I will just have to take one day at a time.
Take care. http://www.healthboards.com/ubb/wave.gif

MaggiMacaw,
I know how you feel about not getting any anwsers,I went back to the doctor yesterday and they did not really discuss much with me. I still don't know which cardiomyopathy I have. That's why I come here. Maybe it's because I have more tests to take. I don't know.
Well take care and good luck. http://www.healthboards.com/ubb/wave.gif

Your cardilologist will be able to give you the best information as treatments and causes vary. You should be able to lead a normal, worry free life with this condition.
BB

Hi emsmedic82,
Thank you for your reply. I hope your right. I didn't get much info yet from the cardioligist.I go back again on the 24th. Do you know anything else about this condition? Do you know someone who has it?
Thanks again,
Christina http://www.healthboards.com/ubb/smile.gif

Hi Christina,
there are some things left I wanted to tell you. Weight-lifting is something you must not do because it can be dangerous.
Next time you see your cardiologist ask him to do an echo. This helps to find out important things about the cardiomyopathy. They can see how much blood passes your heart and so on.
Moreover it could be good to do a catherization. During the catherization they can take a biopsy of your heart muscle to find out wether the cardiomyopathy is caused by an infect or something else.
Next thing to do is to see an electrophysiologist. He can do an ekg inside your heart because most people having cardiomyopathy have arrythmia, too. Do you have?

Don´t hesitate to ask your doc everything you want to know. There are no stupid questions. It is your health and your life and it is your right to learn everything about it.
Good luck
Mezi

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LuckyLadyBug-Before you see your doctor again on the 24th, write out a list of questions you need answers to and one by one, ASK them. Ask the doctor to give you time if you want to write down his/her answers. It's hard to remember everything we're told in the doctor's office, and we get home and kick ourselves for a) not asking or b) not remembering what they said!