nonischemic cardiomyopathy with an EF of 20%

I have been diagnosed with the above, can anyone really tell me what this means. My cardio dr says come back in May, I will re check you and then propably ref you to the university hospital for a heart pump/transplant. Should I be freaking out??? I need help here, I dont know what to do or say, its not like this happens everyday to know what questions/concerns I should have. Please help

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Hi. It sounds like you are feeling pretty overwhelmed right now. Here's a link to Cleveland Clinic's page about cardiomyopathy: http://my.clevelandclinic.org/disorders/Cardiomyopathy/hic_What_is_Cardiomy opathy.aspx

Here's mayo clinic's page: http://www.mayoclinic.com/health/cardiomyopathy/DS00519

In general treatment involves medications to help your heart pump better, primarily ACE inhibitors or ARB's and beta blockers. If you are having fluid retention you may be on a diuretic. When there are marked conduction abnormalities causing the chambers of the heart to beat out of synch, a biventricular pacemaker may be used. With low EF below 30 or 35% an ICD (defibrillator) may be recommended.

The terminology can take a while to assimilate. There are lots of people on this site with cardiomyopathy who can share their experience. Take things a day at a time for now.

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Did he put you on any meds to try and help your heart? If not, that would be my first step I would request if I were in your shoes. An EF of 20% is very low, normal is like 50-70% and basically means that your heart is only pumping out that much blood with each beat. Sometimes people can have improvement with certain drugs that make the heart beat more strongly basically. If not, then they can now insert a pump that will take over some of the work of your heart and give it a rest. I've read of a couple of people who have done this and it made a huge difference in their heart, and some of them eventually were able to come off of it once their heart had a chance to "rest" and heal some.

Do you know what has caused this to happen in your heart? I would want to know that as well. Is it something that can be fixed surgically, like valve problems? If you haven't already done so, I would request copies of all your tests for your own files and that way you'll be able to compare for yourself how your heart is doing from visit to visit.


Kim

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Kim, thank you so much for your response. The muscles in my heart are weak and detrioated(sp), they put and AICD in last april when my ef was 35% and now 8 months later its down to 20%. My cardio said he was going to ref me to get a heart pump, but is making me wait and I still dont know why all this waiting is for.

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Kim, thank you so much for your response. The muscles in my heart are weak and detrioated(sp), they put and AICD in last april when my ef was 35% and now 8 months later its down to 20%. My cardio said he was going to ref me to get a heart pump, but is making me wait and I still dont know why all this waiting is for.

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Hello ..I am Sharon and I'm new to this site..I have MVD, cardiomyopathy, LBBB (left branch bundle blockage),and congestive heart failure... . I also had a pacemaker/defibulator put in last Sept. and on Ranexa, Coreg and Diltiazem, nitro patch and Imdur....was your heart dr. checking you every month...you coming back and maybe trying new medicines? I would definitely go ahead and get a second opinion..NOW....DO NOT WAIT...CALL TODAY...and not one of his partners but maybe at another hospital or another group....If you are needing to be on the heart transplant team in a month then you might need to be on it now....that is why it is very important to get a second opinion right away..when you call for the second opinion tell them that you have a dr. saying you need on the transplant list and that you need to get in right away to get that second opinion..and if you can't get in right away tell them to call you if they have cancelations..and rest as much as possible until you find out what is going on with your heart...I will check back often and see how you are doing....God Bless ...Sharon

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Here is a link to the Mayo site explaining VAD's (ventricular assist device). I'm thinking that's what you're talking about when you say your doctor is talking about a heart pump. http://www.mayoclinic.com/health/lvad/my01077

I recently found a website about transplantation that has a lot of interesting info: http://www.transplantliving.org/

If you have this many questions, perhaps you need to make another appointment with your doctor to discuss them. A second opinion to make sure you have all your bases covered would help too.

If you haven't already, try the terms "LVAD" and "transplant" in the search box at the top of the page. This will help you find threads discussing these issues and maybe put you in touch with people who have been there. I hope this is helpful. I don't want to overwhelm with too much info at once.

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I agree with seeking a second opinion. Your EF is very low. Mine was at 9% and my family doctors send me the next day to a cardiologist that after two weeks of trying various drugs (she called me every three days to see how I was doing), and setting me up for a pace maker implant decided to sent me to the U of Washington heart transplant clinic within the week. From there it was immediately into the hospital for observation and the implant. I still have no idea why my heart dilated but four years later, I am off everything but the ace inhibitors and beta blockers and my EF is at 60%. The doctors do not really know why I responded so well, but do not wait. Find someone that will take you seriously. Usually people will respond to the medications without a pacemaker but you may need one as I did because I had really low blood pressure. Never be happy with one opinion. Doctors are just as over worked as anyone else and there are good ones and really bad ones.

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One of the things to ask about when seeking a second opinion, is for a doctor who specializes in heart failure. Interestingly enough, many cardiologists the cardiovascular issues and some are the electrophysioligists (not sure spelling, but those are the ones who handle the irregular heartbeats). I also have cardiomyopathy and my ef has bounced around a bit on different medications, devices, etc. Know that they typically try to stretch out the time before transplant as long as possible. Good luck!

Lisa

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I was diagnosed in Nov 1993 with EF 18% and serious/frequent arrhythmias. Check out the "rest of the story" on my profile.
I am just now finally in need of a transplant. A second opinion is never a bad idea, but while being attentive to your health, you can also have hope!! Isaiah 41:10 has been a great comfort to me. As well as Ps73:26. Keep us updated. I will continue to pray for you. Feel free to contact me by friending me and I can answer and ask more specific concerns. Take heart!
Love
Cyndi

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