Dialated Cardiomyopathy with decreased EF rate

Posted by camaroyo @camaroyo, Jan 20, 2019

I had mitrol valve replacement in 2014. I was recently diagnosed with dialated cardiomyopathy. I’m getting a muga scan end of Jan 2019 to get a better read on my EF rate cause it’s right on the cusp of heart failure. I’m trying to find more info on this diagnosis. Supposedly, life span has increased from 2 to 5 years to possibly 7 or more years. I have a pacemaker but expect to get a defibrillator put in to help avoid possible sudden death. The muga scan will determine my need for this. Any one have any current information on this diagnosis.

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Sue, Volunteer Mentor | @sueinmn | Aug 24, 2022

In reply to @indigogirl "Hello, So I am a recovered addict and about a week ago, I found out that..." + (show)

@indigogirl Wow, that must certainly be a shock to hear! Has your doctor sent you to a cardiologist yet? If not, it is definitely time to go as soon as possible.
You also need to be referred to a heart center where they deal with cardiomyopathy. It is rare, but it does happen to young people. They can help you explore your options
Do you have a support group in your life - either friends or family?
Sue

indigogirl | @indigogirl | Aug 24, 2022

In reply to @indigogirl "Hello, So I am a recovered addict and about a week ago, I found out that..." + (show)

Yes, I have some support people, but none that are familiar with my particular disease. Being that I have the cardiomyopathy and the EF of 25% my dad said alot of the medications they cannot give me, ( my dad is in stage 4 of congestive heart failure) So what I am trying to figure out is, what are my chances of an operation? And what type of operation am I looking at?

indigogirl | @indigogirl | Aug 24, 2022

In reply to @indigogirl "Hello, So I am a recovered addict and about a week ago, I found out that..." + (show)

So I just recently found out that I have heart failure due to cocaine use, is there anyone else familiar with this? What happened?

indigogirl | @indigogirl | Aug 24, 2022

In reply to @sueinmn "@indigogirl Wow, that must certainly be a shock to hear! Has your doctor sent you to..." + (show)

I certainly feel really alone. I feel like my family are sick of hearing about it, but I don't think they understand how serious it is, they think that it's just like getting diagnosed with asthma or being diagnosed with diabetes.. it really sucks to feel so alone in this

Sue, Volunteer Mentor | @sueinmn | Aug 24, 2022

In reply to @indigogirl "I certainly feel really alone. I feel like my family are sick of hearing about it,..." + (show)

I really think you need to talk to a cardiology team about what your options are are this point.
Sorry not to be more help, but they are the experts, with access to all of your records.

And you are right! Cardiomyopathy is definitely not like asthma or diabetes.
Sue

Amanda Burnett | @amandaa | Aug 24, 2022

In reply to @indigogirl "Hello, So I am a recovered addict and about a week ago, I found out that..." + (show)

Hi @indigogirl Goodness, that is a heavy diagnosis for someone so young.
Wanted to introduce you to @camaroyo, who has been diagnosed with the same problem. I moved your post to their discussion so you can connect and share your experience.

I may have missed where you answered Sue, but have you seen the cardiologist? Did they recommend a pacemaker or anything?

indigogirl | @indigogirl | Aug 24, 2022

In reply to @amandaa "Hi @indigogirl Goodness, that is a heavy diagnosis for someone so young. Wanted to introduce you..." + (show)

I don't see the doctor til the 8th, but I'm literally going crazy. I'm super congested I can't breathe I've been coughing for days I have like no appetite, and I have no idea if any of this is even normal. I don't even know what to expect, or what might happen. I'm so sad

camaroyo | @camaroyo | Aug 24, 2022

@indigogirl Hi, it is a scary diagnosis, but you need to see your cardiologist first. It’s amazing what they can do now. Just to help you understand you are not alone.. my niece was diagnosed with an EF rate of 15% and is now doing very well. Hardest thing is the waiting. I was at 30% and now at about 48% and doing well. Just understand it takes time and the nicest thing you can do for yourself is to try hard to remain calm. Write a list of questions for your Dr. visit because it’s easy to forget things when you see them. You are in my prayers and please let me know how you are doing…

Dana, Volunteer Mentor | @danab | Aug 26, 2022

In reply to @indigogirl "I don't see the doctor til the 8th, but I'm literally going crazy. I'm super congested..." + (show)

Hi Indigogirl, So as I understand your ef is about 25%, 30 which is the level that when they call it Congested Heart failure or CHF, but when I was about that level I actually was on the road to recovery. Mine when I was first diagnosed with Cardiomyopathy was at 5 % and with treatment via medication got to a height of 50 % but it took a few years.
The first step is a cardiologist they are the experts on these types of conditions and with things like medication and maybe a pacemaker but not always. I first was given a pacemaker only as a precaution since mine was so low at 5 %. And also another issue which may be making it worse is fluid retention. When your heart gets weaker it's hard for it to push against the lungs which is how fluid is pushed from your body into the digestive track and ultimately out thru your bladder. This fluid is what caused me to be out of breath and Lack of energy. Not something to mess with. So another sign of fluid is swelling in your ankles. Mine got so bad I could not breath when lying down and I had to go to the ER and that's what got me on the road to recovery. So if your having problems breathing please go to an ER and not wait. I look forward to hearing how your doctors visit goes. But also realize after some medication and watching your fluid retention my life got back to normal.
Blessings

indigogirl | @indigogirl | Aug 26, 2022

In reply to @danab "Hi Indigogirl, So as I understand your ef is about 25%, 30 which is the level..." + (show)

Thank you, the difference is mine is caused from cocaine overdoses and it caused severe damage to my heart. I've been seeing cardiologists for years but it's never been this bad

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