1. < Hypertrophic Cardiomyopathy (HCM)
Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page. 

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

hncm | @hncm | Jan 26 1:36pm

I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding, hiking, etc. Never smoked, don't drink, no diabetes, no high bp, no CAD, but sleep apnea with CPAP (which I've been very bad at wearing regularly). Suddenly after an "event" I was diagnosed with HCM! Wait . . . what???? So now what? Glad to find this group because currently feeling helpless and hopeless and want my old life back (especially scuba)!

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1 reply
cynthia1gendteau | @cynthia1gendteau | Feb 1 9:56pm
In reply to @05357 "I was diagnosed with broken heart syndrome. My ejection/fraction was at 26. I have been wearing..." + (show)
@05357

I was diagnosed with broken heart syndrome. My ejection/fraction was at 26. I have been wearing the life vest for 3 months - has anyone here wore the vest

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Yes I have worn it for 2 1/2 months. Ejection fracture was 35%. Am having another echo mid-February

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Mentor
Debra, Volunteer Mentor | @karukgirl | Feb 2 3:40pm
In reply to @hncm "I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding,..." + (show)
@hncm

I'm Barb, 77, previously healthy, lifelong scuba diver, sailor (international 50'+ sailboats), swimming, cycling, kayaking, paddleboarding, hiking, etc. Never smoked, don't drink, no diabetes, no high bp, no CAD, but sleep apnea with CPAP (which I've been very bad at wearing regularly). Suddenly after an "event" I was diagnosed with HCM! Wait . . . what???? So now what? Glad to find this group because currently feeling helpless and hopeless and want my old life back (especially scuba)!

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Hello Barb, @hncm, I see you are new around here! Welcome to Mayo Clinic Connect.
I'm glad you found this online support group too. It's amazing how good it feels to learn you are not alone. Especially since you were blindsided by this diagnosis.
You sound so active and healthy with an incredible life...no wonder you are scared. I think we pretty much all were when finding out about this HCM/HOCM stuff.
With such an active lifestyle, have you found that you can no longer do your favorite things? Or have you been advised not to until further testing?
Helpless and hopeless are negative feelings. Do not allow them to take control.
You need to educate yourself on everything you can about this condition and be the leader in your own journey.
Have you read this from the Mayo?:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Or this from 4HCM?:
Hypertrophic Cardiomyopathy Association
https://www.4hcm.org
I remember well feeling frightened and scared I was going to die every time I hiked or danced. I was told not to ride my Harley anymore until I had further testing...so I get feeling depressed. HOCM takes so much joy from living.
Is your doctor well trained in HCM?
Have you thought of a second opinion? I had three!
When is your next appointment? Have you been given options for treatment?

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jachrist | @jachrist | Feb 2 8:33pm

Hi,
I'm Jim
I'm a HOCM patient that had alcohol septal ablation and now I have stiff heart syndrome as well. I have more appointments at the Mayo in the next few weeks.

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1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Feb 3 10:22am
In reply to @bbuck "Hi! I'm Brenda" + (show)
@bbuck

Hi! I'm Brenda

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Hello @bbuck, Brenda. Welcome to Mayo Clinic Connect.
You posted in the Hypertrophic Cardiomyopathy (HCM) support group, is this what brings you to Connect?

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ache6941 | @ache6941 | Feb 11 1:10am
In reply to @cynaburst "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..." + (show)
@cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

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I feel like I am alone in this journey. Thank you for creating this group. In my country (Ethiopia, Africa), I have never met other HCM patients, and I have never received advice from real patients who understand what I am going through. It is very hard because the treatment here is also poor.

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2 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Feb 11 4:06pm
In reply to @ache6941 "I feel like I am alone in this journey. Thank you for creating this group. In..." + (show)
@ache6941

I feel like I am alone in this journey. Thank you for creating this group. In my country (Ethiopia, Africa), I have never met other HCM patients, and I have never received advice from real patients who understand what I am going through. It is very hard because the treatment here is also poor.

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I am so glad you found this support group @ache6941, you are certainly not alone!
The HCM/HOCM group is pretty active and shares a lot of information with each other. This helps in multiple ways, one being you may learn something you did not know, and another is you will find you share so much in common with others and you are not alone in your symptoms or your journey.
It is difficult to explain to someone who does not have this condition what it is like to live with this condition. The shortness of breath. Rapid, racing, pounding heart rate. Fatigue. Inability to do routine tasks or activities. Chest pain/burning. I could go on...there are many more symptoms.
Mayo Clinic Connect is unique for it's moderated content, it's members are patients or caregivers, and the warm and welcoming community where you are free to share with others.
Is your cardiologist in Ethiopia up-to-date on Hypertrophic Cardiomyopathy? Are you able to travel to the Mayo Clinic for a second opinion? People from all over the world come to the Mayo Clinic for the best care on the planet for many complex cases such as HCM/HOCM.

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ache6941 | @ache6941 | Feb 11 7:19pm

Thank you so much for your kind words. It makes me feel better to know I am not alone. Living with HCM is very hard. I have shortness of breath, feel very tired, and cannot do my daily work.
I see my heart doctor every three months. He told me I need open-heart surgery (myectomy or alcohol ablation). If not, I need Mavacamten. But in my country, no doctor does this surgery, and the medicine is not available. I only take beta blockers, 100 mg twice a day.
My health is getting worse. Breathing is difficult, and I cannot do my normal activities. I want to know how I can get treatment at Mayo Clinic. How can I get admission? Please, if you have any information, tell me. I need help to get better!

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1 reply
walkinggirl | @walkinggirl | Feb 12 10:31am
In reply to @ache6941 "I feel like I am alone in this journey. Thank you for creating this group. In..." + (show)
@ache6941

I feel like I am alone in this journey. Thank you for creating this group. In my country (Ethiopia, Africa), I have never met other HCM patients, and I have never received advice from real patients who understand what I am going through. It is very hard because the treatment here is also poor.

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People travel to Mayo from all over the world. Does anyone know how to contact the people who take a referral for surgery - from reviewing a case to financial help - before the concierge service can do their part? (Somehow this post originally appeared as a response to another topic. Must've not been paying attention.)

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