Dilated Cardiomyopathy

Welcome

by Pookie - 2008-12-06 08:12:04

Hi Ralph.

I don't have an ICD, I have a pacemaker. BUT....I am positive someone on this site has gone thru what you are going thru and perhaps can share their experiences.

Most of us who have had something happen to our hearts or something permanently attached to our hearts go through a rough spell. I did. Still do.

You certainly found a wonderful site here and will get bowled over with support!!! Excellent little club here.

Do you know of the SEARCH feature? upper right hand corner....tons of information there.

Good luck and welcome to the best club ever!

Pookie

Pookie and Joy, thank you.

by PARNASUS - 2008-12-07 01:12:13

Thank you both for your input and support, this site has been truly amazing in giving support and encouragement.
Joy, I too was declared "cured" of DC when I was 42 years old only to have it return with a vengence sometime in my early 50's causing more damage than before. I take my prescription strength Omega 3's daily along with several herbs and the requisite medications given by my docs. I walk several miles a day.
Through all of this I have just wanted to talk with someone else who is on this roller coaster. Because I am a big strapping guy who looks like he can wrangle a full sized bull to the ground it's hard to convince my loved one's that sometimes I just need to lay in bed and do nothing because the energy just isn't there. Thank you both again. Ralph

Ralph

by joy1 - 2008-12-07 08:12:03

Big guy or little women (me), having a heart condition is one of the more frustrating illnesses because people can't really see it. And there you are, a relatively young, strong looking person who has a need to lay around because their heart just doesn't work right. Boy, do we all understand that! No pun intended, but my heart goes out, to the young people we have on this site and have been dealing with the same things and also the hassle of just trying to grow up.

I'm sorry to hear that your myopathy has come back. Did you have another cardiac event which triggered it?

Not only did my myopathy go away but i was able to get my ICD out. I too, may be in for the problem of a reoccurance because i have already become more active now that the ICD is out and I'm feeling better. My myopathy came back with the removal of the leads of my device but the doctors don't expect it to stay. I have hated to having to admit that there are things I can't do any more but there it is, i just can't do it all anymore. My husband has been trying to convince me of this for awhile now. Slowly, I'm giving into it. I'm a nicer person to be around when I'm not so tired all the time.

Ralph, feel free to email at my_joy1@hotmail.com if you want to talk.

joy

Welcome to our little club!

by joy1 - 2008-12-07 12:12:18

Hi Ralph,
cardiomyopathy... swelling of the tissue of the heart. When the heart has to work harder than normal to pump, the muscle tissues swell, causing the heart to become enlarged. This is very much like what happens to your other muscles when you do alot of exercise, they swell and ache. Your heart is just a muscle. It is common for the heart to become enlarged following a heart attack or other interruption in the flow of cardiac blood.Once the heart becomes enlarged, it's hard to reverse the process because your heart has to keep working. And that's what the problem is, it has to keep working. The more active you are the harder your heart has to work. Exercise is good for you and your heart but when you suffer from myopathy it's a catch 22. That's the reason an ICD would have been recommended. The heart gets tired, so that little device is there to help you if your heart gets too tired.

I used to have cardiomyopathy. Yes, used to have it. I became extremely inactive and just sat around for a couple of years. I also have taken 2000 mg of salmon oil daily. There are some research results which support the possibility of the benefits of using the omega-3. My last echocardiogram showed that my heat had returned to normal size. So, have hope that your situation can change. Hope this helps a little. In the mean time be kind to yourself.

joy

cardiomyopathy

by craig1075 - 2009-01-11 12:01:08

Ralph:

I have dialted cardiomyopathy and now have a St Jude CRT-Pacmaker(biventricular), which was implanted 12/01/08 electively after failing in hospital trials of 3 different drugs that caused Vtac. My CRT-P does not include an ICD as my ejection fraction is above 35%.

I'm also an RN with a former background in Critical Care Nursing (currently a hospital supervisor) with formal training from University on how to critque research.

Feel free to email me at craig1075@gmail.com.

Steve

Dilated Cardiomyopathy

by Avid Reader - 2017-07-25 17:49:18

i am new to this site, having just had a CRT-D five days ago.  The pain from the surgery is lessening and I am feeling more energetic.  I, too, look perfectly healthy, am 58 years old and work full time.  It is good to see someone else with Dilated Cardiomyopathy on this site.  I have been diagnosed 2 1/2 years.  At first my EF improved from less than 20 to 35-40 but had decreased to 32, probably because of the LBBB.  I am hoping that my EF I proves with the device.

part of clubs and clarify acronyms

by ak - 2021-04-22 15:55:09

Hi i also am struggling with ARVC (Arrhythmogenic right ventricular cardiomyopathy) - recent results are showing severe dilation and conversations points to a possible translplant in the future. I too have struggled to find cardiomyopathy patiens and am curious if the general guideline like @joy1 said is to just stop excercing ? 

Secondly can folks  help clarify acronyms used during conversations ? example i didnt understand any part of @Avid Readers comment below

"At first my EF improved from less than 20 to 35-40 but had decreased to 32, probably because of the LBBB"