HCM-ers: Introduce yourself or just say hi

Hello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I'm still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at "low-risk" for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough...

I've just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.

The likelihood is that you will live your life with few changes due to your diagnosis. They have so far only identified some of the genes that cause HCM, so just because your test came back negative does not mean that yours is not genetic.

Nevertheless, it is best to be treated at a place that has substantial expertise with HCM like Mayo Clinic who can do a thorough assessment of your situation. Where do you live?

McComb, Mississippi

My physician at Mayo said that genetic testing still has a ways to go when identifying the HCM gene, in that it does not always show up. Getting a second opinion is your call, but here is a recent study that shows it is prudent to do so, and if you would, it would be recommended to visit a Center of Excellence regarding HCM. http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

Hello @tkterrell,

I can only imagine how worried you must be with this diagnosis! Before anything else, I'd like to welcome you to Connect and want you to know that you have joined a wonderful, supportive community, ready to share their experiences and insights which will, I am certain, help alleviate your worries.

I'm tagging fellow Connect members, @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos, to bring them into this conversation about hypertrophic obstructive cardiomyopathy, and hopefully address some of your questions and concerns.

Here is more information from Mayo Clinic, about HCM: if you click on this link, http://mayocl.in/1GGdGn4 you will see a number of informational videos, treatment options, patient testimonials that might interest you.

@cynaburst, @ronaldpetrovich have offered very valuable suggestions, and shared their insights about genetic testing; I would sincerely encourage you to also view this live discussion that took place recently, in which Steven Lester, M.D., cardiologist, at Mayo Clinic, Arizona. talks specifically about hypertrophic cardiomyopathy & genetics:
#MayoClinicHeartChat about Hypertrophic Cardiomyopathy & Genetics: http://mayocl.in/2nTVJQs

@tkterrell, being diagnosed with HCM can cause some difficult emotions; how are you managing your stress level? What lifestyle changes has your doctor recommended?

Hi, I added my profile ..Not sure if I'm hooked up right.HCM is my prob. My user name is fitchizumi saw it on member list but now I don't.

Welcome, @fitchizumi. I can see your profile here: http://mayocl.in/2tx2mJX. To see your profile or anyone else's profile, simply click their @name. In your bio, you mentioned that you're having trouble with meds. Are you managing HCM with medication at this time? What issues are you having? Is surgery an option for you?

Yes I have lots of drug allergies . Yes a blood thinner and verapamil 120mg. It's been changed lots of times.Exhaustion all the time.
Don't know about surgery. Dr. Said something else would kill me. I might be to old plus I have other health problems some long term chronic.

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I'm sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?