1. < Hypertrophic Cardiomyopathy (HCM)

HCM specialist?

Posted by rondar @rondar, Nov 25, 2019

Hello! I had a myectomy and aortic valve replacement at Mayo. I have HCM. I have a wonderful cardiologist in the cardiac valvular clinic but would like to consult with a HCM specialist. Is this unreasonable. Do all the cardiologists work together? I don’t want to insult my valvular Dr. I have children and grandchildren and genetic testing has not been addressed.

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rondar | @rondar | Nov 27, 2019
In reply to @rrowner2 "Rondar I am truly sorry that your doctor was not upfront with you. My husband was..." + (show)
@rrowner2

Rondar I am truly sorry that your doctor was not upfront with you. My husband was diagnosed with mitral valve problems at the age of 43, 41 years who) but a year later the diagnosis changed to HCM. October 4 2018 he had septal myectomy at Mayo Rochester after being severely compromised to the point of fainting. He is as normal as normal can be Doing amazingly well still has HCM but it’s no longer obstructive. he takes 50 mgms a day of atenolol We talked to the cardiologist about genetic testing for our son to which the cardiologist recommended having an echo every 5 years so his first echo was normal he will be monitored for the rest of his life.
I hope this helps. Keeping as fit as you can with diet and exercise really helps recovery after surgery if that’s what you need. Best wishes to you and Happy Thanksgiving 🦃

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Thank you for taking time to respond. Have a wonderful Thanksgiving.

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sasilla | @sasilla | Mar 19, 2020
In reply to @kanaazpereira "Hi @rondar, You are absolutely correct about wanting to consult an expert on HCM – Connect’s..." + (show)
@kanaazpereira

Hi @rondar,

You are absolutely correct about wanting to consult an expert on HCM – Connect’s alumni mentor @cynaburst has always recommended the same.

Mayo Clinic has a long-standing hypertrophic cardiomyopathy program that provides highly individualized care. Specialists in the Hypertrophic Cardiomyopathy Clinic at Mayo Clinic diagnose and treat people who have HCM. Care is provided by cardiologists, surgeons, specialized medical assistants, nurses and genetic counselors with specialized training and expertise in HCM. https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502

You can read more testimonials from Connect members @badmac @sarah_e @sheim @dp52350 @knecht in these discussions:
– https://connect.mayoclinic.org/discussion/freaking-out-a-bit/,
– https://connect.mayoclinic.org/discussion/surgery-on-jan-30th/

I’d also encourage you to read, "Notes from presentation by Dr. Joe Dearani re: Myectomy at HCM Summit” https://connect.mayoclinic.org/discussion/notes-from-presentation-by-dr-joe-dearani-re-myectomy-at-hcm-summit/

@rondar, may I ask if you would share what's concerning you, at present, about the HCM diagnosis?

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I had a myectomy at Tufts and they have a great team. I had my surgery done by Dr. Rastegar he did a great job and he has done the most myectomies than any surgeon. They treated me great their team is fantastic and so is that hospital yesterday was a year i had my surgery > 🙂

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lvon | @lvon | Mar 20, 2020

Congrats on your success! And your picture should be on a billboard, beautiful.

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angiev18 | @angiev18 | May 30, 2020
In reply to @rrowner2 "Rondar I am truly sorry that your doctor was not upfront with you. My husband was..." + (show)
@rrowner2

Rondar I am truly sorry that your doctor was not upfront with you. My husband was diagnosed with mitral valve problems at the age of 43, 41 years who) but a year later the diagnosis changed to HCM. October 4 2018 he had septal myectomy at Mayo Rochester after being severely compromised to the point of fainting. He is as normal as normal can be Doing amazingly well still has HCM but it’s no longer obstructive. he takes 50 mgms a day of atenolol We talked to the cardiologist about genetic testing for our son to which the cardiologist recommended having an echo every 5 years so his first echo was normal he will be monitored for the rest of his life.
I hope this helps. Keeping as fit as you can with diet and exercise really helps recovery after surgery if that’s what you need. Best wishes to you and Happy Thanksgiving 🦃

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You mentioned your husband was severely compromised before having the surgery, septum myectomy? What kinds of foods in particular did your husband eat to stay fit and healthy? Post surgery does he have relief of his symptoms?

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rrowner2 | @rrowner2 | May 30, 2020

We had always had a really healthy diet veggies fish you know the usual stuff We are not big beef eaters and exercise. The decline in my husbands health was pretty dramatic ( he had been diagnosed at 43 and had surgery40 years later) we had been hiking in Rwanda to see the gorillas in sept 2017 a pacemaker/ defibrillator implanted 3 months later. We live at 4500ft so exercise became really difficult with several episodes of syncope So was not allowed to walk alone. He was truely compromised prior to surgery but he did really well post surgery , out of hospital on the 4th day and flew home to California 2 days later. His recovery was amazing which I think was because he didn’t have co morbid conditions. His diet was the same and he continued a glass of wine every day 😊🍷
I don’t think he realized how compromised he was until after the surgery.
My thoughts are with you, take care this is the BEST support group you will meet anywhere.
Take care

REPLY
1 reply
angiev18 | @angiev18 | May 30, 2020
In reply to @rrowner2 "We had always had a really healthy diet veggies fish you know the usual stuff We..." + (show)
@rrowner2

We had always had a really healthy diet veggies fish you know the usual stuff We are not big beef eaters and exercise. The decline in my husbands health was pretty dramatic ( he had been diagnosed at 43 and had surgery40 years later) we had been hiking in Rwanda to see the gorillas in sept 2017 a pacemaker/ defibrillator implanted 3 months later. We live at 4500ft so exercise became really difficult with several episodes of syncope So was not allowed to walk alone. He was truely compromised prior to surgery but he did really well post surgery , out of hospital on the 4th day and flew home to California 2 days later. His recovery was amazing which I think was because he didn’t have co morbid conditions. His diet was the same and he continued a glass of wine every day 😊🍷
I don’t think he realized how compromised he was until after the surgery.
My thoughts are with you, take care this is the BEST support group you will meet anywhere.
Take care

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Thank you for your response. I haven't had a glass of wine since diagnosed with HOCM 4.5 months ago. I eat alot of chicken, tuna, beef once a week. Gave up salt altogether, and have one cup of coffee a day instead of my usual 3 or 4 before diagnosed. I love coffee, just added one cup a day back. Just trying tho figure it all out and trying to gather information from those that have been there, done that and are on the road back to health and normalcy. Thank you for your response. The best of luck to your husband and yourself.

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charlieandmary | @charlieandmary | May 23, 2023

Good luck. I have 3 brand children with a positive DNA test for HOCM. 11,14,18 years old. Their father, my son passed away last October from a MI. His septum was 23mm.

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | May 23, 2023
In reply to @charlieandmary "Good luck. I have 3 brand children with a positive DNA test for HOCM. 11,14,18 years..." + (show)
@charlieandmary

Good luck. I have 3 brand children with a positive DNA test for HOCM. 11,14,18 years old. Their father, my son passed away last October from a MI. His septum was 23mm.

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Hello @charlieandmary, welcome to the Hypertrophic Cardiomyopathy support group. Before I go any further, I would like to let you how profoundly sorry I am to hear about the loss of your son. It has only been since October and this must still feel so new to you...I can not imagine your pain. There just are no words that will help. However, you have entered into a group of people who are so supportive and kind and caring. Here you will find people that share their HCM journey and perhaps you will learn some valuable information as you navigate forward.
Knowing your three grand children carry the gene must be very scary to you. They are 11, 14, and 18, what do they understand about their condition? Are your grand children being followed closely by a cardiologist or an HCM specialist? How are you coping with all this?

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1 reply
charlieandmary | @charlieandmary | May 23, 2023
In reply to @karukgirl "Hello @charlieandmary, welcome to the Hypertrophic Cardiomyopathy support group. Before I go any further, I would..." + (show)
@karukgirl

Hello @charlieandmary, welcome to the Hypertrophic Cardiomyopathy support group. Before I go any further, I would like to let you how profoundly sorry I am to hear about the loss of your son. It has only been since October and this must still feel so new to you...I can not imagine your pain. There just are no words that will help. However, you have entered into a group of people who are so supportive and kind and caring. Here you will find people that share their HCM journey and perhaps you will learn some valuable information as you navigate forward.
Knowing your three grand children carry the gene must be very scary to you. They are 11, 14, and 18, what do they understand about their condition? Are your grand children being followed closely by a cardiologist or an HCM specialist? How are you coping with all this?

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We have a trained World class specialist from Cleveland clinic.
She specialized with HOCM. I think we are in the right place.
Dr. Kassira at UT Medical Center Knoxville, TN.
Please keep us on your prayer list.
Thank You
Charlie

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | May 23, 2023
In reply to @charlieandmary "We have a trained World class specialist from Cleveland clinic. She specialized with HOCM. I think..." + (show)
@charlieandmary

We have a trained World class specialist from Cleveland clinic.
She specialized with HOCM. I think we are in the right place.
Dr. Kassira at UT Medical Center Knoxville, TN.
Please keep us on your prayer list.
Thank You
Charlie

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Charlie, I'm so happy to know you have the Cleveland Clinic in your corner. They too are world class leaders in HOCM. Praise God for that. I was already praying for you and your family as I sent that first post...and will continue doing so, because that sometimes is the only thing we can do. HCM is such a strange disease. Some have it and do not ever know they do. Some have it and only learn about it because someone else in the family has it. Some have it, only later learning what it really is after being misdiagnosed with something else for a long time. I do not know your son's circumstances, and I will not pry. HCM can be life changing for your grandkids, as knowing they have this could lead to modifying their physical activities depending on the sports they are involved in and according to their doctors advice. SCD (sudden cardiac death) is the "elephant in the room" that we all fear. When I learned that SCD could happen to me, I thought of all the times I had been hiking, ballroom/swing dancing, lifting weights, doing yoga...and it could have happened. But it didn't. I felt very blessed. It sounds like you are a close family and that is so wonderful to hear. You have been through so much already. Is their mother involved too? Do your grandkids understand their condition?

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