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bibi12
@bibi12

Posts: 10
Joined: May 27, 2016

Cardiomyopathy

Posted by @bibi12, May 27, 2016

Has there been any discussions on severe cardiomyopathy

Liked by fastfay

REPLY

Welcome @bibi12,
There are several discussions in the Heart group about cardiomyopathy and HOCM. See these
https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
https://connect.mayoclinic.org/discussion/hello-i-had-surgery-at-mayo-in-2014-a-cardiac-septal-myectomy/
https://connect.mayoclinic.org/discussion/what-is-cardiomyopathy-can-you-explain-systolic-cardiomyopathy-how-about-diastolic-cardiomyopathy/

But I welcome this new thread specific to severe cardiomyopathy. Let me introduce you to the gang. Please meet
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag

Bibi, why don’t you start off the conversation and tell us a bit more about yourself? How long have you had HCM? Have you had a myectomy? How are you managing today?

@colleenyoung

Welcome @bibi12,
There are several discussions in the Heart group about cardiomyopathy and HOCM. See these
https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
https://connect.mayoclinic.org/discussion/hello-i-had-surgery-at-mayo-in-2014-a-cardiac-septal-myectomy/
https://connect.mayoclinic.org/discussion/what-is-cardiomyopathy-can-you-explain-systolic-cardiomyopathy-how-about-diastolic-cardiomyopathy/

But I welcome this new thread specific to severe cardiomyopathy. Let me introduce you to the gang. Please meet
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag

Bibi, why don’t you start off the conversation and tell us a bit more about yourself? How long have you had HCM? Have you had a myectomy? How are you managing today?

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Do you have HCM, or some other type of cardiomyopathy like dilated, pehaps? Let us know a little more about your situation.

@colleenyoung

Welcome @bibi12,
There are several discussions in the Heart group about cardiomyopathy and HOCM. See these
https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
https://connect.mayoclinic.org/discussion/hello-i-had-surgery-at-mayo-in-2014-a-cardiac-septal-myectomy/
https://connect.mayoclinic.org/discussion/what-is-cardiomyopathy-can-you-explain-systolic-cardiomyopathy-how-about-diastolic-cardiomyopathy/

But I welcome this new thread specific to severe cardiomyopathy. Let me introduce you to the gang. Please meet
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag

Bibi, why don’t you start off the conversation and tell us a bit more about yourself? How long have you had HCM? Have you had a myectomy? How are you managing today?

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Thanks for replying.

I am 52 and at the age of 50 went to see a cardiologist for a simple stress test. Instead a sonogram and ekg showed severe cardiomyopathy. I have no family history of heart disease at all and never suffered from anything related to the heart. I was running half marathons with no issues. I was beyond surprise when I was suddenly diagnosed but second opinion confirmed everything. For almost a year and a half we tried to improve the situation with medication quinipril
and carvidilol main medications. For about six months I was a bit better but then went downhill and it was recommended I have a pacemaker put in. I have great doctors that I trust but I just don’t know how I’m supposed to feel. My chest doesn’t hurt and I don’t have Afib, but I am constantly exhausted. It’s been 3 months with the pacemaker. They had to change carvidilol to bisoprolol because my short term memory was so affected by carvidilol. I’ve gone from very active to struggling with exercise.

Bibi

Sorry to hear of your troubles.

I assume from reading what drugs you are on that you have dilated cardiomyopathy? There are a few different kinds. Dilated means that you have a reduced ejection fraction (EF). Do you know what your EF is?

Also, do you have a bi-ventricular pacemaker or do you have a pacemaker/defibrillator combination?

@colleenyoung

Welcome @bibi12,
There are several discussions in the Heart group about cardiomyopathy and HOCM. See these
https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
https://connect.mayoclinic.org/discussion/hello-i-had-surgery-at-mayo-in-2014-a-cardiac-septal-myectomy/
https://connect.mayoclinic.org/discussion/what-is-cardiomyopathy-can-you-explain-systolic-cardiomyopathy-how-about-diastolic-cardiomyopathy/

But I welcome this new thread specific to severe cardiomyopathy. Let me introduce you to the gang. Please meet
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag

Bibi, why don’t you start off the conversation and tell us a bit more about yourself? How long have you had HCM? Have you had a myectomy? How are you managing today?

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I’m also sorry to hear of your troubles. I was diagnosed with hypertrophic cardiomyopathy at age 56. While it does sound as though you have dilated cardiomyopathy. I do believe that fatigue is something all of us with cardiomyopathy deal with and some days are better than others. Part of the fatigue may come from the medications, but part from the disease itself. I have a pacemaker/defibrulator. What type of device do you have?

Thanks for your comments. They are helpful. I was diagnosed with an ejection fraction of 25 originally. Got it up to 30 then it went down to 22. I am trying to figure out what normal is going to be from here on. It sounds like I will have good days and bad. My pacemaker has a defibrillator and an extra Leed.

@bibi12

Thanks for your comments. They are helpful. I was diagnosed with an ejection fraction of 25 originally. Got it up to 30 then it went down to 22. I am trying to figure out what normal is going to be from here on. It sounds like I will have good days and bad. My pacemaker has a defibrillator and an extra Leed.

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Sometimes people wtih biventricular devices like yourself do very well with cardiac resynchronization therapy and get their EFs back to normal. You may get lucky. And the medications are always a trial and error process.
What is most important is to see a heart failure specialist and make sure they are treating you as aggressively as they can. Transplant is always an option if you get too symptomatic, but with any luck, you will be able to avoid that.

Hi bibi. I was Diagnosed with Hypertrophic Cardiomyopathy when I was 39. Which was just last year. I can completely relate to your trouble with exhaustion. I get that way a lot, but I’ve also had a lot of chest pain, wheezing, an irregular pulse and trouble breathing.

@Sensation

Hi bibi. I was Diagnosed with Hypertrophic Cardiomyopathy when I was 39. Which was just last year. I can completely relate to your trouble with exhaustion. I get that way a lot, but I’ve also had a lot of chest pain, wheezing, an irregular pulse and trouble breathing.

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I have to say some of the posts I’ve read are very helpful. Makes me feel less confused.

I also find it hard to breathe sometimes. The worse is I’m gaining weight although I’m eating less. I think it’s just the lack of exercise but I’m starting to get alarmed because I’m sure extra weight isn’t helping.

Vivian

@bibi12 have you been diagnosed with dilated cardiomyopathy?

@colleenyoung

@bibi12 have you been diagnosed with dilated cardiomyopathy?

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Possibly. I’m listed as nonischemic cardiomyopathy

Vivian Rivera Drohan

Hi, are there any members in this discussion who may speak Spanish and would be willing to connect with @guadalupe regarding hypertrophic cardiomyopathy?

I speak a little Spanish. I can try to help her out.

Liked by Gabriela Mora

Google translate is a great help!

Liked by Gabriela Mora

@cynaburst

I speak a little Spanish. I can try to help her out.

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Perfect @cynaburst! I will connect you to her. Thank you!

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