bibi12
@bibi12
@bibi12
Posts: 10
Joined: May 27, 2016
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7711
Joined: Jul 23, 2014
@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?
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?
REPLY
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 8440
Joined: Mar 28, 2016
@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?
@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?
I signed up thanks
Liked by Colleen Young, Connect Director
@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?
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.
Liked by Colleen Young, Connect Director
debcrawford
@debcrawford
@debcrawford
Posts: 21
Joined: Oct 21, 2016
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.
Liked by Colleen Young, Connect Director
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
@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.
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.
Liked by Colleen Young, Connect Director
debcrawford
@debcrawford
@debcrawford
Posts: 21
Joined: Oct 21, 2016
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
@debcrawford Thank you so much for replying! I just want to feel better!
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.
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
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/
debcrawford
@debcrawford
@debcrawford
Posts: 21
Joined: Oct 21, 2016
@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?
Hello, I had a Myectomy, no pace maker or defibrillator
lisab62
@lisab62
@lisab62
Posts: 33
Joined: May 10, 2016
@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?
Have you seen a Hematologist to make sure your blood levels are good enough to support your heart if not I would consider it
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7711
Joined: Jul 23, 2014
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
Liked by Teresa, Volunteer Mentor
Teresa, Volunteer Mentor
@hopeful33250
@hopeful33250
Posts: 8440
Joined: Mar 28, 2016
@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
@colleenyoug, Thanks, Colleen,
@woodywood
In reply to @colleenyoung
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 !
Liked by Teresa, Volunteer Mentor