By Maja1959 Latest Reply 2013-12-14 09:38:03 -0600
Started 2013-09-07 19:20:49 -0500

I would be interested on anything anyone knows about cardiomyopathy. All I know is that I have an enlarged heart muscle. I know that it will never get better. But I can maintain and function. I am tired quite a bit. I have a pacemaker defibrillator. I also have diabetes which is now in control and I am off meds. I had one carpal tunnel surgery which hasn't seemed to work so far. It was done on June 21 and I am told it could take three mos to a year. Still waiting. I just had both cataracts done and am waiting on a new pair of glasses. And I have a dropped bladder. But I am still alive!

When I was diagnosed with cardiomyopathy and got my pacemaker defibrillator my heart was beating at 15% ejection. Now they say oh hey it is normal. It is 20-30. I was told normal is 50. So really not sure what to believe. If that is the case then why did I need the pacemaker defibrillator? I think these are some serious questions to bounce off the pacermaker defibrillator doc at my appointment in Oct.

Curious if there are others out there with cardiomyopathy and congestive heart and what they think or feel. My memory is not as good as what it use to be either. Not sure what to think. I try to stay active and busy. I have a bit of empty nest going on here too as my son just left for college. Although I am on disability I want to talk to disability and docs and see if I can't get out of this quiet house part time anyways. I need to be out amongst the living if you get my drift. I love to help others. I have had my pacer defibrillator for three years. Thanks for listening!


You have all the other heart aliements listed what about cardiomyopathy?

4 replies

Nogz 2013-12-14 09:38:03 -0600 Report

Come join us on cardiomyopathy groups on Face book. Very interactive and helpful! I have CHF/ DCM, ICD #6! There are many posts on different groups like cardiomyopathy, big heart group, living with an ICD. There are many people who are very supportive. We all share a lot.

Gulcherboy 2013-09-07 19:54:32 -0500 Report

Bear in mind that I am not a doctor and I did not stay at a Holiday Inn last night, but I think I can take a shot at giving you some good information.
First, cardiomyopathy is simply Latin for "a sick heart." Literally — "cardio" is heart and "myopathy" is sickness. In your case, the specific disease is congestive heart failure. If your ejection fraction was down to 15, you were a good candidate for the pacemaker defibrillator. Naturally, I have no idea what your ejection fraction is now but, 50 percent is normal for a healthy heart. We probably could make a case that whether your ejection fraction is 35 or 50, it needed the pacemaker defibrillator to get there, making that a good decision. I don't know if that's the case or not — remember, I said I'm not a doctor.
I hope that helps at least a little. And remember, if you have diastolic heart failure, ejection fraction becomes a much less meaningful statistic. But, it sounds like you've got systolic heart failure and ejection fraction is almost everything, so pay attention to it.

Maja1959 2013-09-07 21:39:22 -0500 Report

I was told by the cardiologist it is a enlarged heart muscle. It was 15 when I got the pacer defib. It is now 20-30 to me which is it? If it's 20 I worry cause it is still near 15 but if it is 30 then I don't worry as much because it is better. Do you k now what I mean? I am told that 50 is a normal ejection because when the heart pumps it is not 100 percent full of blood. It is only 50 percent when normal.

It just seemed like before I had to jump through hoops etc and keep all kinds of logs and now it doesn't seem to matter. And I don't feel any different is all I am saying. Other than all the other aliments diabetes, arthritis, etc.

I was just curious if others have had cardiomyopathy and for long it has been happening for them? Thanks! I go to see the pacer doc in Oct. so will talk to him more hopefully I will remember things. I hate that I don't remember stuff as well. I am 54 my mind should not be going yet! I can be driving down the street and all of a sudden it is like where am I going then I drive for a short distance and it is like oh yeah now I remember. I just feel like I use to be more on top of my game. That is why I am hoping to get out amongst people at least part time. I am beginning to believe that three years on disability is taking its toll. They say don't use it loose it. I like to read and try to keep active in that regard and right now I am crocheting a baby blanket. I don't know. I was just wondering how others with cardiomyopathy are coping and feeling. Thanks for your thoughts!


I was never told diastolic or systolic heart failure. I was told cardiomyopathy weakening of the heart muscle and enlarged heart. So I don't know. I don't hear much of people with cardiomyopathy only of people with congestive heart failure. I am suppose to have some of this too. I don't know. Since I am a secretary I keep logs through spread sheets. I use excel and put all the contents across the top of the colums and then down the left side I put the date and the meal and what I ate in that meal and then I go across and write how much of what was in what I ate. I do another spreadsheet that keeps track of my weight, blood pressure, blood sugar, and pulse and activity/exercise. Because if I gain a pound a day or five pounds in a week then I am to call the doc. And they usually just adjust my Lasix (water pill). And I keep track of my meds and dosages from all my docs.

You know what I miss is that when I was a kid you only went to one doc. Now there is a specialist for everything. it would be nice to have it all under one house if you know what I mean. But it isn't like that. Just saying…sometimes it gets tiring. Today I got up about 8 and went to walmart about 11 I got home about 4 and had a early supper. I was whooped. I sat and watched the news and got my second wind. Now I am restless. I need to get to bed and forget the world for awhile maybe. Maybe my subconscious is thinking about my son at college. Hoping he is making all the right decisions. I just called him to get advice on how to save my external hard drive since he is studying to be a computer engineer and it is dark and late and they are down by the river swinging on a rope? I asked him what about campus police. He assures me he doesn't drink. I guess I have to trust him…too far away for otherwise…I guess I try to go to sleep and forget him and the world till tomorrow and hopefully tomorrow I sleep in…sorry to go on and on. Have a good night!

arkansasurviver 2013-09-07 22:36:05 -0500 Report

Okay wow so much going on, don't know where to begin. So first I think from what I understand you may have cardiomyopathy and then at a certain point your heart goes in to the level of heart failure. So then you get that tag of being a CHF patient.

As far as diastolic or systolic, I have both and some have one or the other. I can't remember everything they tell me. I think the only reason they can is they have a chart! LOL!

Then on the topic of EFs. I have 35 and I am paced 100% of the time. According to my experience it is all about my fluid! I carry it all in my abdomen, so watch the weight. For everyone it is different, so they tell me.

Just to include my info I am a 30 yo female with cardiomyopathy/chf/afib/secondary hypertension. Who knows what else!!!!