HCM-ers: Introduce yourself or just say hi

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?

Before having any invasive procedure, such as ASA or septal myectomy, best to be seen at a center that can evaluate your suitability for both procedures so you can see which one suits you best. As with anything major, best to go with the place that is the most experienced.

@cynaburst

Before having any invasive procedure, such as ASA or septal myectomy, best to be seen at a center that can evaluate your suitability for both procedures so you can see which one suits you best. As with anything major, best to go with the place that is the most experienced.

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Thank you 

My sister was just diagnosed with HCM and now she has many schedule doctor's appointments. We don't know anything about this disease and have never heard about it where do we start

@kwkm

My sister was just diagnosed with HCM and now she has many schedule doctor's appointments. We don't know anything about this disease and have never heard about it where do we start

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Hi @kwkm. Sorry your sister is dealing with this. Mayo Clinic is one of the best places to seek care for HCM in the world. You can start learning about HCM here:

https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

Basically, it is usually but not always hereditary, and it consists of a heart that is thicker than normal. The thickness causes the heart to be stiff and can cause blockage of the blood flow leaving the heart. It can also cause arrhythmia.

Another couple of places you can read about HCM is a blog that I actually write and moderate:

http://Www.hcmbeat.com/home

And lastly, the HCMA is another good source of information:

http://Www.4hcm.org

There are several of us with HCM around here. Feel free to ask any questions. Though HCM has had a bad reputation for many years, it is, these days, a highly treatable disease which is compatible with a normal life span. The key is to be seen at a center that sees lots of HCM patients and has an expertise in HCM. Not every place does, and even though by numbers it should be very common, most doctors are just not that experienced with treating it, and the treatments are often quite different than with regular heart disease.

Wishing your sister all the best.

Welcome to Connect, @kwkm.
I'd like to introduce you to a few members in this group, who've shared their HCM journey, and I'm confident that will give you some valuable insight. Please meet @PatMattos @Sensation @rmwundrow @mbcube @janicepike @ronpetrovich @barbjp @susan317 @choochoo @tkterrell.

@kwkm, could you share a few details about your sister? Did she have symptoms that led to this diagnosis?

Liked by janicepike

@kwkm

My sister was just diagnosed with HCM and now she has many schedule doctor's appointments. We don't know anything about this disease and have never heard about it where do we start

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One bit of advice – General medical websites tend to paint a very scary picture of HCM. Please go to the links that Cynaburst mentioned as they are experts and can give you honest, practical and patient-focused advice. Please understand that HCM is now estimated to affect 1 in 250 people. 80% of the population with HCM does not know it, and will likely not know it as it doesn't affect their life enough to warrant a doctor visit. With proper care – folks with HCM live just as normal and long a life as the general population. And its really key to be seen by someone experienced with HCM treatment. Even in large cities with excellent healthcare systems, very few cardiologist have no more than a handful of patients – and this isn't enough for them to learn about the fickleness of this disease. At places where the focus is on HCM, they are often a sub-set clinic within an existing medical center (Like Mayo's) and the majority of their clients have HCM or one of its similar genetic conditions.
There is a lot to learn and it may seem overwhelming at times – I often say "that you've have had HCM your entire life and you really don't need to focus 100% on it" – take your time, ask questions, vent, share and know you have a good support system here.

Hi, I am Amos Adams

Hi, I was diagnosed with HCM in October of 2017. I will be having surgery on January 31. 2019.

Hello, my name is Priscilla. I am 46yrs old and was diagnosed with HOCM in May 2018 with 40 gradient (I think this is what is called). I started off by taking Dialtiazem 120mg and 25mg of Metoprolol and now a little over a year later I am taking 360mg of Dialtiazem and 50mg of Metoprolol. We are now discussing having a septal myectomy since I still get shortness of breath and chest pain. My blood pressure is elevated quite a bit and my doctor says they are limited as to what meds I can receive because of my heart condition. I also have chronic kidney disease so I am worried how my elevated blood pressure will affect this and how my heart working so hard will affect my kidneys. How much medication did most of you take before you decided on surgery? How often should I be having pain and shortness of breath before I completely decide on surgery ? Thank you

@melthomas

Hi, I was diagnosed with HCM in October of 2017. I will be having surgery on January 31. 2019.

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What changed for you to decide on surgery now?

@priscilla1972

Hello, my name is Priscilla. I am 46yrs old and was diagnosed with HOCM in May 2018 with 40 gradient (I think this is what is called). I started off by taking Dialtiazem 120mg and 25mg of Metoprolol and now a little over a year later I am taking 360mg of Dialtiazem and 50mg of Metoprolol. We are now discussing having a septal myectomy since I still get shortness of breath and chest pain. My blood pressure is elevated quite a bit and my doctor says they are limited as to what meds I can receive because of my heart condition. I also have chronic kidney disease so I am worried how my elevated blood pressure will affect this and how my heart working so hard will affect my kidneys. How much medication did most of you take before you decided on surgery? How often should I be having pain and shortness of breath before I completely decide on surgery ? Thank you

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Hi Priscilla
My husband had septal myectomy on October 4 six weeks ago.
Prior to surgery and the reason he had the surgery was that he was on max doses of meds 100 mgms of atenolol and 250 mgms of Norpace and still having shortness of breath and syncope (he had hypertrophic cardiomyopathy for 30 + years)
Having the surgery had made an amazing difference. He’s 74

@priscilla1972

Hello, my name is Priscilla. I am 46yrs old and was diagnosed with HOCM in May 2018 with 40 gradient (I think this is what is called). I started off by taking Dialtiazem 120mg and 25mg of Metoprolol and now a little over a year later I am taking 360mg of Dialtiazem and 50mg of Metoprolol. We are now discussing having a septal myectomy since I still get shortness of breath and chest pain. My blood pressure is elevated quite a bit and my doctor says they are limited as to what meds I can receive because of my heart condition. I also have chronic kidney disease so I am worried how my elevated blood pressure will affect this and how my heart working so hard will affect my kidneys. How much medication did most of you take before you decided on surgery? How often should I be having pain and shortness of breath before I completely decide on surgery ? Thank you

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When to have surgery is really an individual decision. I tried meds for a few years and my symptoms were getting worse and the side effects were more and more bothersome. I made the decision because I felt my quality of life had declined to the point where I was willing to take the risk of surgery. I think that is what you have to think about. At what point do you feel like you can't go on with all the drugs and will your situation improve substantially after surgery. For example, it may allow you to better control your blood pressure and take some stress off your kidneys. You should discuss the pros and cons with your doctor.

Hello everyone, Niri here from Seattle, Washington. 42 years old, diagnosed with HCM (apical and mid ventricular) couple years ago but recently having more frequent shortness of breath symptoms. Looking forward to connect with you all, sharing and learning together in this tough journey ahead.

@niri9

Hello everyone, Niri here from Seattle, Washington. 42 years old, diagnosed with HCM (apical and mid ventricular) couple years ago but recently having more frequent shortness of breath symptoms. Looking forward to connect with you all, sharing and learning together in this tough journey ahead.

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My husband was diagnosed a withHCM at 42 he was symptom free with meds til this year when out if the blue he had a complete heart block and a pacemaker defibrillator implanted. He took max dose of meds and had surgery for obstructive HCM on October 4 this year and has had an amazing recovery and is symptom free and minimal meds. So don’t be afraid if surgery is suggested

Hi I'm tom I had septal myectomy in 2012 and feel no better what is going on?

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