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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

@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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Hello, I have HCM at 60 I had a myectomy 7 years ago after 6 years of doctors not knowing what was wrong with me. I could not walk very far without getting out of breath, finialy I found a Doctor that referred me to a doctor at Loma Linda Univ Redlands, Ca The best doctors. I’m able to walk fast and do not get tired. A Blessing !

@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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Welcome to Connect @woodywood. I’m glad you joined our group. I think you might also be interested in our upcoming webinar:
Nov 2 – “Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy” with Mayo Clinic cardiac experts Drs Schaff and Ommen You can sign up to take part here: http://mayocl.in/2dmWhdI

You might also be interested in meeting fellow HCM-ers in these discussions:
– Amiodarone for HCM http://mayocl.in/2dgLzqH
– Diagnosed with HOCM last year. May be time for surgery http://mayocl.in/2ef1nMc
– Not able to overcome my anxiety and FEAR related to my HCM http://mayocl.in/2ef3aRh

Woody, can you tell us a bit more about your recovery period? What activities did you include in your rehab? How long did it take to get back to walking like you can today?

Liked by Sensation, woodywood

@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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@woodywood Congratulations on your recovery. I’m glad to hear that your are doing so much better. Please share, if you can, what was included in your recovery program. Was it meds or cardiac therapy? Best wishes!

@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 signed up thanks

@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?

Jump to this post

My recovery was fast, I was in the hospital for 4 day. It was a challenge the first few weeks post op. I made sure I was up every morning to shower and dress to go for a short walk. I did this everyday because it felt good to get out of bed. I was given Norco for pain for the 1st month, within 6 Weeks I was riding the trails on my dirt Bike.

I have had Hypertrophic Obstructive Cardiomyopathy for 9 years, I am only 51 years old. I inherited it from my dad, its genetic and have had my 3 kids checked. The wall between my right and left ventricle is between a 2.9 and 3.0. I fight chest pain, severe chest pressure, exhaustion ( I could sleep all day and night) shortness of breath and easily winded walking and going up and down the staires, the heat really bothers me and I have passed out a couple times.
Three and a half weeks ago I had a Pacemaker/Defibrillator put in and they started me on a drug they don’t use much called Norpace, I havent noticed any change and the drug has given me some side effects such as blurry vision and forgetfulness. We decided today to take me off of it and up my dosage for Metoprolol and started me back on a higher dose of Verapamil. My Cardiologist is also contacting Mayo in Rochester MN.for a consultation for a Myectomy.

@debcrawford

I have had Hypertrophic Obstructive Cardiomyopathy for 9 years, I am only 51 years old. I inherited it from my dad, its genetic and have had my 3 kids checked. The wall between my right and left ventricle is between a 2.9 and 3.0. I fight chest pain, severe chest pressure, exhaustion ( I could sleep all day and night) shortness of breath and easily winded walking and going up and down the staires, the heat really bothers me and I have passed out a couple times.
Three and a half weeks ago I had a Pacemaker/Defibrillator put in and they started me on a drug they don’t use much called Norpace, I havent noticed any change and the drug has given me some side effects such as blurry vision and forgetfulness. We decided today to take me off of it and up my dosage for Metoprolol and started me back on a higher dose of Verapamil. My Cardiologist is also contacting Mayo in Rochester MN.for a consultation for a Myectomy.

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Hi Deb,
You sound alot like me. I am also 51, and have HCM. My dad also had it, and his brother and father before him. I had a myectomy at Mayo 10 years ago after going through all the drugs, including Norpace. It helped me for a few years, but then I went on to myectomy at Mayo. It helped alot.

If you would like, you can read all about my experiences at Mayo:
http://www.cynthiassummeradventure.blogspot.com
Also, I have a newer blog with a page of resources about myectomy:
http://www.hcmbeat.com/resources/resources-for-patients-about-myectomy/
I hope that helps you figure out more about what to look forward to in the future. It is scary to go through open heart surgery, but very worth it in the end, I found.

Thank you so much for replying! I just want to feel better!

@debcrawford

Thank you so much for replying! I just want to feel better!

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I had many of the same symptoms you describe. I fainted a few times, and felt horrible going up hills or stairs, to the point I wouldn’t even try. Now, I am so much better. Not perfect, but it has made a huge difference. I don’t feel like I am going to faint anymore, which is huge, and the SOB is much better. I still take alot of medication, so it is not a miracle cure, but it certainly went a long way to making me feel alot better.

One more thing – if you are on Facebook, we have a group on Facebook for HCM patients at Mayo Clinic.
You can join it here:

https://www.facebook.com/groups/MayoClinicHCM.Patients/

I just feel like I’m sleeping my life away.

@cynaburst

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?

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Hello, I had a Myectomy, no pace maker or defibrillator

@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?

Jump to this post

Have you seen a Hematologist to make sure your blood levels are good enough to support your heart if not I would consider it

Hi all,
We’ve just opened a new group on Connect dedicated to Hypertrophic Cardiomyopathy (HCM) https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/ I hope you’ll follow the group and introduce yourself here: http://mayocl.in/2errn7m

@colleenyoung

Hi all,
We’ve just opened a new group on Connect dedicated to Hypertrophic Cardiomyopathy (HCM) https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/ I hope you’ll follow the group and introduce yourself here: http://mayocl.in/2errn7m

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@colleenyoug, Thanks, Colleen,

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