nervous about family history

[rezdirector]

I'm quite a hypochondriac and perhaps am worrying about nothing, but reading this site has made me alarmed. I apologize if this post is long, but I'd appreciate any advice you can offer.

I am a 27-year-old healthy male. I have no symptoms of HCM, but was diagnosed with an innocent murmur at 18. Doc didn't feel an follow up was necessary. I saw a nurse practitioner three years ago for upper-respiratory virus and she didn't mention hearing a murmur at all. I am worried because my grandmother was diagnosed with HCM in her 30's. She is 71 now and doing okay.

When I recently started freaking out about HCM I asked my mother if she'd ever been screened. She said that she had an echo at 35 because of a murmur detected during pregnancy, the results showed no problems. She's now 55 and has no symptoms of HCM. My father (53) recently had a bout of atrial fibrillation which could not be traced to any cause. His tetsing ran the gamut (ECG, echo, angiogram). The AF couldn't be traced to any heart abnormality.

I have four other siblings (range in age from 16-29), most have had innocent murmurs along the line, with some having echo, ECG testing that came up negative for heart disease. Other than the murmurs, there is no familial history of heart disease, sudden-death or HCM. One early death (50) from coronary artery disease on my fathers side. Other than that, longetivity is pretty typical.

Am I unecessarily freaking out about this? I know that I should just go to the doctor to be checked, but I'm terrified of doctors and diagnostic testing associate with HCM freaks me out as well. Have I mentioned I have anxiety issues?

If anyone can offer any words of advice I'd appreaciate it.

[Sarah]

its ok

Hi,

Are you being treated for your anxiety disorder? There are some good meds out there if you require them.

As for HCM, the vast majority of HCMers live long full lives, as evidenced by your grandma. ALso afib is the most common of arrhythmias and can be caused by lots of things, even caffiene or alcohol.

However, an echo would be in order for your whole family, as if there is any HCM that needs treatment, they can get it.

The most healthy HCMers are posting here saying "Hey, there is nothing wrong with ME!" so please understand that you are not seeing the whole spectrum of HCM on the board.

Seeing a doctor at this point should just confirm for you that you are ok and have nothing to worry about. Even if you did have mild hypertrophy, it is treatable. Look to your grandma.

take care and keep us posted.

Sarah

[Reenie]

Hi. I agree with what Sarah said, but wanted to ask something... You mentioned your grandmother having HCM, and your mom had a murmur and your dad had afib. Ok, which one is your grandmother's child. Most murmurs are benign, meaning nothing to worry about. It never hurts to get checked out to be sure, though. As far as the afib goes, I honestly can't think of anything that would cause it that wasn't cardiac related. It just sounds a little odd. Please, see a doctor about getting screened. You will have less anxiety once you know one way or the other.

Reenie

[Sarah]

clarify

Hi,

There is something called "lone afib" where someone develops afib for no known reason. One of my doctors at the Mayo, even, has it.

By "other causes" I meant other triggers outside of HCM.

I got the impression it was mom who was grandma's kid.

Dad may want to visit the Yahoo Group "afib support" for more info on afib if he doesn't have HCM.

take care,

S

[rezdirector]

Thanks for the replies, you're info. is helpful.

To clarify, Dad does have lone afib and is doing wonderful with drug treatment.

Grandmother with HMC is my mother's side of the family, which is why my Mom's clear echo at age 35 eases my mind a little bit. I'm planning to get details from my grandmother regarding her HMC. Any ideas what types of questions I might ask to get an idea about my risk? Grandma has two kids (my mom and my uncle), is it possible that the gene for HMC was not passed on? I'm gonna find out if my uncle has been screened. He is 35, no symptoms.

[Sarah]

genes

Hi,

HCM is autosomal dominant, so each child of someone with HCM has a 50/50 shot at getting it. All of grandma's kids should be screened as well as their kids.

HCM was not described until the 50s and is still not completely understood, so your grandma may know very little (especially if she wasn't told to have all of you screened).

You would want to know if any of her parents, grand parents or siblings, cousins, etc. died suddenly of a "heart problem".

Keep us posted and please call the officed at 973-983-7429 to talk to Lisa and allay your fears. Also read the rest of the web site for HCM info.

S

[Reenie]

Thanks for the replies, you're info. is helpful.

To clarify, Dad does have lone afib and is doing wonderful with drug treatment.

Grandmother with HMC is my mother's side of the family, which is why my Mom's clear echo at age 35 eases my mind a little bit. I'm planning to get details from my grandmother regarding her HMC. Any ideas what types of questions I might ask to get an idea about my risk? Grandma has two kids (my mom and my uncle), is it possible that the gene for HMC was not passed on? I'm gonna find out if my uncle has been screened. He is 35, no symptoms.

Hi. I understand the family dynamics now. Well, to begin with, there is a 50-50 chance of passing the HCM gene. Either you pass it or you don't. The HCM trait is a dominant trait. That means that 99% of the time if you receive the gene from your parent, you will exhibit the disease sometime in your life. (My percentage may be off a little, but you get the point.) It's not a lot unlike inheriting brown eyes. If your mom passes brown traits and your dad passes blue traits, you will most likely have brown eyes. I am glad that your mom was screened clear, but she should be retested. There are cases of people who don't exhibit HCM until they are adults. Please see the thread about age of diagnosis: http://www.4hcm.org/phpBB2/viewtopic.php?t=1370. Your uncle should also be tested.

You would want to ask if there has been anyone else in your family who had heart problems, especially if they died at an early age. That might indicate they had HCM as well. Also, take heart that your grandmother is doing well. That is wonderful. Take care of yourself and let us know if you have any other questions.

Reenie

[Lisa Salberg]

Here is my take -
Get an echo, ekg and a check up by a cardiologist. Sometimes the mental aspects of HCM are as harmful as the physical. If you have it and are asymptomatic - you still have it and may require treatment.
The only way to know if to have a workup and get the echo and know the numbers...
This will give you piece of mind if you have it you will know if you do not you will know that as well.
Lisa

[Tom Scott]

Whats going on in your family is what went on in mine 15 years ago---I was diagnosed 1st in the early 70's, my family was screened and everyone ignored their positive findings. So far 2 have had atrial fib in their 40's and one endocarditis from mouth bacteria (they have now seen the light for treatment and monitoring). However,my family is also known for longevity (I have been on blockers for 30 years) and have had the least problems in spite of a fairly thickened wall. Parts of my family still refuse testing.

Good luck

[Lisa Salberg]

HI Tom!
Nice to see you here! just thought I would say hello!
Lisa

[rezdirector]

taking everyone's advice

Thanks for all the information. I took everyone's advice and made an appointment with my new Internist to have a physcial and discuss my concerns. Now I just have to figure out a way to calm down for the week while I wait for my appointment. I sent the Doc an email to let him know of my doctor-phobia and he seems sympathetic.

I talked with my Grandmother who has HCF. She said that the only problem she's ever had was a brief period of afib about two years ago. She took medication (cardizem) for a few months and then her cardiologist took her off of it with no further problems. She's 73 and doing fine. I also asked if my uncle (her son) had been screened for HCM. She said that he's had negative ekg's and echo's. Since she only has two children, and both have screened negative for now, maybe the HCM gene won't run further in the family.

[Reenie]

Hi. I'm glad you're making the first step. There is a chance that your grandmother didn't pass the gene at all. We'll hope so. Remember, even if she did, it isn't a death sentence! Just look at her, 73 and still doing great. What better personal family history could you want, right? Have a good week and don't dwell on your appointment. I'm sure all will go just fine.

Reenie