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Tue, Apr 30 7:16am · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

The Septal Myectomy was very effective for me at the Mayo. The pacemaker and defibrillator is for a different component of this heart disease, which is an electrical component. The myocytes in the heart Are configured differently than in a normal heart. It is called “ myocyte disarray”. It can lead irrregular and potentially lethal heart rhythms like ventricular tachycardia and ventricular fibrillation. This of course can lead to sudden-death. You may want to talk to your second cardiologist about a pacemaker and defibrillator. Good luck.

Mon, Apr 29 1:26pm · PAC or pav in Heart Rhythm Conditions

Hello this is @lisa7.I’m afraid I’m not all that computer savvy. But I do have a pacemaker and defibrillator. I had a sub to buy it to me at the mayo clinic in 2014. If I see another response on here I would be happy to offer any information about my experiences with my pacemaker defibrillator.

Thu, Apr 25 10:36pm · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

You sound like me! I was diagnosed with HOCM in 2012, and had a septal myectomy at Mayo Rochester, MN in November 2014. Mayo saved my life. I had been tried on many meds, and I have a pacemaker/defibrillator. I’m sure the Mayo will evaluate you extremely carefully, as they did me. This surgery alleviated many of my symptoms. They are very careful and thorough. I think it’s very Natural to be nervous and apprehensive. I had been evaluated at several major medical centers, The only thing they could offer me were medication adjustments.
I am very thankful I had the surgery. My symptoms had become very severe. I am a registered nurse, so I was very familiar with where my condition was taking me.
Do you have a pacemaker defibrillator? You may want to discuss that with your cardiologist.
I wish you the best of luck, and I’m sure you’ll be in a very fine care at the Mayo.

Tue, Feb 12 10:36am · What is cardiomyopathy? Can you explain systolic and diastolic cardiomyopathy? in Hypertrophic Cardiomyopathy (HCM)

My cardiologist says that I have severe diastolic dysfunction. I had a myectomy at the Mayo Clinic In Rochester Minnesota four years ago. This past December I had my pacemaker defibrillator replaced due to battery reasons. I have had a rough recovery. I have gained weight, and I’m wondering what the correlation is between weight gain and diastolic dysfunction. I am very thankful that I have survived this, and am doing as well as I am. I have been cleared to go back to yoga but I am still quite short of breath and have a lot of chest pain. Does anybody out there have any suggestions? Just feeling somewhat discouraged

Wed, Feb 6 7:44pm · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Hello, I do not remember my username?

Feb 28, 2017 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

Dear Pace, I had a septal myectomy for hypertrophic obstructive cardiomyopathy in November 2014. Despite the ordeal of surgery and recovery, I am so thankful that I went to Mayo Rochester. My mother was diagnosed with HCM when she was 61 and had an alcohol septal ablation. It was very ineffective, she survived to age 68 continuing to have symptoms, and had SCD. She did not have an ICD. I hope that you do. I have an ICD and I was diagnosed at 51 and I am now 56. I was the happiest person in the world to be going into the operating room, because I knew if I did not have the surgery I would not survive, I felt I had maybe less than a year. I am a registered nurse, and although I still have some chest and heart pain, I was able to return to work.
My primary reason for responding to you is that I did wake up INTUBATED. It was more uncomfortable, not really painful, just sore and of course VERY INVASIVE. Being a nurse, I knew immediately not to try to pull it out, they would have simply reintubated me. My oxygen saturation levels were very low. But the staff in CCU was very reassuring and kept me informed.
I now do yoga several days a week, and I wish I had had good breathing, relaxation, and meditation techniques prior to surgery, that I have developed in yoga. I don’t know the % of patients at Mayo who remain intubated after surgery. I can tell you that whatever your condition, or needs after surgery, they will make sure your care is outstanding. I knew they would not let me die. It is really the best medical care in the world.
I GOT MY LIFE BACK. IT WAS WORTH IT.
Please reply if I can help you.
Kindest regards and heartfelt best wishes for
you, Lisa