1. < Heart & Blood Health

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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camaroyo | @camaroyo | Jan 20, 2019
In reply to @colleenyoung "Hi @camaroyo, I moved your message to the Heart & Blood Health group to connect you..." + (show)
@colleenyoung

Hi @camaroyo, I moved your message to the Heart & Blood Health group to connect you with others who have similar issues with mitral valve replacement, ejection fraction and dialated cardiomyopathy, like @jillybeans22 @tiredofbeingsick @predictable @hopeful33250 and @murryone.

Did you see this video with Dr Timimi about heart failure with preserved ejection fraction? https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/

Camaroyo, what is your EF rate?

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@colleenyoung I did see that video by Dr Timimi, but not quite sure it pertains to my situation. I’m going to rewatch it...

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lioness | @lioness | Jan 20, 2019
In reply to @camaroyo "30 Jan is my Muga scan. Anxious to see what it shows, but I am expecting..." + (show)
@camaroyo

30 Jan is my Muga scan. Anxious to see what it shows, but I am expecting a defibrillator to b needed w/ my pacemaker. Praying that works if needed because the next step is very scary.

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@camaroyo I hope it goes well for you but I had a triple by-pass in 1996 My last nuclear test was 2yrs agi and everything is fine , important thing is listen to your Dr

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 7, 2019
In reply to @camaroyo "30 Jan is my Muga scan. Anxious to see what it shows, but I am expecting..." + (show)
@camaroyo

30 Jan is my Muga scan. Anxious to see what it shows, but I am expecting a defibrillator to b needed w/ my pacemaker. Praying that works if needed because the next step is very scary.

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Hello @camaroyo

You posted about a MUGA scan at the end of January. I hope that went well for you. If you are comfortable doing so, please provide an update as to how you are doing and the scan results. Did they provide your doctor with any new information?

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1 reply
camaroyo | @camaroyo | Feb 7, 2019
In reply to @hopeful33250 "Hello @camaroyo You posted about a MUGA scan at the end of January. I hope that..." + (show)
@hopeful33250

Hello @camaroyo

You posted about a MUGA scan at the end of January. I hope that went well for you. If you are comfortable doing so, please provide an update as to how you are doing and the scan results. Did they provide your doctor with any new information?

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@hopeful33250 hi thanks so much for asking. I got the scan 30 Jan and actually go for the results later this morning. I’ve been walking daily and hoping that may be helping some. I feel fine so far and did not receive a call from dr. during my wait for results to today so that’s a good sign. I plan to post later...hopefully with positive news. Thanks again!!

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1 reply
camaroyo | @camaroyo | Feb 7, 2019
In reply to @camaroyo "@hopeful33250 hi thanks so much for asking. I got the scan 30 Jan and actually go..." + (show)
@camaroyo

@hopeful33250 hi thanks so much for asking. I got the scan 30 Jan and actually go for the results later this morning. I’ve been walking daily and hoping that may be helping some. I feel fine so far and did not receive a call from dr. during my wait for results to today so that’s a good sign. I plan to post later...hopefully with positive news. Thanks again!!

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@hopeful33250 I got my results from muga scan and got very positive news!! My EF is at 47% so nothing to be done at this time. We are very relieved. I’m continuing walking everyday...I believe it helped me. I’ve been chair bound for a bit due to foot surgery, but finally able to walk some. Not stopping!!! Very happy!!!!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 7, 2019
In reply to @camaroyo "@hopeful33250 I got my results from muga scan and got very positive news!! My EF is..." + (show)
@camaroyo

@hopeful33250 I got my results from muga scan and got very positive news!! My EF is at 47% so nothing to be done at this time. We are very relieved. I’m continuing walking everyday...I believe it helped me. I’ve been chair bound for a bit due to foot surgery, but finally able to walk some. Not stopping!!! Very happy!!!!

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@camaroyo

Thanks for your update. That is a wonderful increase in your EF, congratulations!!! It must be a relief to know that nothing else needs to be done now.
Is your foot healing well?

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1 reply
camaroyo | @camaroyo | Feb 7, 2019
In reply to @hopeful33250 "@camaroyo Thanks for your update. That is a wonderful increase in your EF, congratulations!!! It must..." + (show)
@hopeful33250

@camaroyo

Thanks for your update. That is a wonderful increase in your EF, congratulations!!! It must be a relief to know that nothing else needs to be done now.
Is your foot healing well?

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@hopeful33250 Yes, it is great news for us. I’m always thankful for everyday, but this type of scare makes you even more grateful! (If thats possible!) lol. My foot healed very well overall, but needs to be “tweaked” again to make it right. Means another 6 weeks or so in a boot and then re-healing again. Not sure now when I’ll do that. It hurts to walk... but, I wear Tommie Copper compressions on feet and Oofa shoes so my walking is pretty pain free... these two items made a huge difference...when there’s a will there’s a way!!!

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indigogirl | @indigogirl | Aug 23, 2022

Hello,
So I am a recovered addict and about a week ago, I found out that I'm in stage c of heart failure, I had a EF of 42% in April and now, it's 25% my primary care physician also said that she can't put me on any medication due to my low blood pressure. So is there anyone who has had any similar situations? I'm 30 by the way, what do you think will happen? I'm going crazy thinking about what's going to happen

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