Heart Murmur

[angall Member of 1000 Post Club! Find all posts View Profile Close angall]

Hi
I have a question. Do most people that has HCM also have a heart murmur? I've had one all my life, but my son did not. Even though he had echos, it was never detected. I was told it wasn't detected because he had a very mild case. When he passed away, they did an autopsy and never found it until my cardiologist insisted that they specifically look for HCM. So they did another autopsy and that's when they discovered it.

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Re: Heart Murmur

Some do and some don't. Another of the anomalies with this disease.

Reenie

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Heart Murmur

Esther and I just had a wonderful talk on the phone. Her post caused me to PM her and asked her to call me... I am very glad she did!!
I want to be clear on something about her post. Sometimes it is very hard to find HCM on an echo and that yes sometimes echos are not enough. Today we have MRI's when we are in doubt - in 1994 it was not a reality to be able to use MRI - this is when Esther lost her son Michael to HCM.

Those with HCM may not have a murmur if they are not obstructed - therefore less than 50% will have a significant murmur - the rest may have only a mild or no murmur at all.

I remain amazed at all of you - especially Esther - you have all been many things in your lives some of which are rather difficult times and you are all here helping each other, learning and LIVING with HCM!

My conversation with Esther also reminded me of something I had not thought of in a long time - she told me that I was not what she expected -
I get so comfortable with you all I forget that very few of you know me that well. I spend my time here on the message board talking about very serious stuff and my style of writing has become rather dry in an attempt to be a clear as possible. Down at the base I am a straight talking girl from NJ who is trying my hardest to make some lemonaide out of this sour lemon called HCM!


Best to all!
Lisa

[angall Member of 1000 Post Club! Find all posts View Profile Close angall]

Re: Heart Murmur

First of all I would like to thank Lisa for talking to me for almost an hour. She cleared up some questions I have had for 10 years and she is working on another puzzle which I am glad to help with.
Second....I was afraid that my post would put negative thoughts for people that have been told get an Echo....it is THE test to determine HCM. After posting, I could have kicked myself, but the damage was done. Little did I know, Lisa explained that doctors can now do MRI's which wasn't being used in 1994 when Michael (my son) passed away. "They've come a long way, baby!" I do agree with people getting echo's especially if there are other symptoms. Just remember there has been a remarkable breakthrough "MRI" and hopefully many others in years to come.
There is so much research that needs to be done to try and answer many questions and Lisa is on top of many.
Lisa, you are the Queen Bee, we are the workers.
I made it home
Thank you with all my heart.

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Heart Murmur

Esther,
I knew you would make it home just fine...Michael lead you there.

I enjoyed our time together on the phone and I thank you for sharing your son with me, I will promise you that Michael will make a difference in the world of HCM.

Big hugs!
Lisa

[Ronnie Major Contributor Find all posts View Profile Close Ronnie]

Re: Heart Murmur

This thread raised some questions, in my understanding of HCM.
I can remember at age 10-11 (over 40 years ago!) my Pediatrician saying I had a Heart Murmur - does that mean I was "obstructed", all these years? I was diagnosed, about 15 years ago (at that time IHSS), I was able to maintain a pretty "normal" life (taking Beta Blockers, Diuretics etc), until about 9 months prior to my Myectomy my symptoms became unbearable! What caused the change?

I question lots of other things ("what came 1st, the chicken/egg"), but I would like to understand the above better.

I hope we can all learn to accept all our symptoms & FLOURISH despite them!

BE WELL

[shirleymahoney Brave Heart Find all posts View Profile Close shirleymahoney]

Re: Heart Murmur

I too had a murmmer as a child well my whole life actually, and also my brother did too, but the only time they hear a murmmer with my is when he bends over then he has a faint one even though he has the disease with a 2.3 cm septum but he didn't have one growing up either, am hoping he is going to be ok and he hasn't inherited all the genes from me,

Shirley

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Heart Murmur

It is unclear as to why the change...if we knew we would be in far better shape then we are today in our understanding of HCM.

Hopefully soon we will have better answers!

Lisa

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

Re: Heart Murmur

Ronnie,

This is something i've thought about for quite some time. Please forgive me if i start to ramble a bit. I'm having one of those days where i want a drink in the worst way... i want to smoke about a carton of cigarettes... and then eat a half gallon of ice cream as well. But i know i can't do any of those things, so i'm going to take it all out on you in the form of one of my mini-novels while i work through these cravings!

I was told i had a murmur in my teens, and now of course know that i have the obstructive form of HCM, progressed rapidly in a few years time, went into CHF, and finally had a myectomy two months ago. About 25% of HCM'ers have obstruction, and it is always accompanied by a murmur to some degree. Some other folks here have murmurs as well, even those without an obstruction... and these are not always directly related to the disease either. Having HCM doesn't preclude us from having other disorders of the heart and valves which could also produce a murmur. Some people just plain get lucky i guess.

I just assume now that my murmur as a teenager was caused by HCM and the obstruction, especially since it was also accompanied by low blood pressure, spells of dizziness, fainting, etc. The doc told my mom i would grow out of it... and seemingly i did! But what i've come to understand is that i've had the obstruction all along.... and probably so did you. I've never been able to undergo intense physical exertion without feeling that clicking in my chest and a host of other HCM-related symptoms... i just always thought it was normal.

Remember also that gradients rise and fall depending on physical activity, hydration, and other things. Children tend to be much more active than adults... perhaps that is why our murmurs were more noticeable at that time. And when you were 10 or 11, you were still very much growing and changing... perhaps your obstruction at that time was just more pronounced as you went through this stage of your life, then settled down a bit as you moved into adulthood and your body adapted. But i'd be willing to bet that it was there all the time.

So if we've had this thing our entire lives, why all of the sudden did our HCM symptoms get so much worse after all these years?

My first answer to that is always the one i like the least... age. Even the healthiest of people with normal hearts start to wear out after time. Perhaps what has made my HCM seem to progress so rapidly all of the sudden is that i'm just experiencing what everyone does at 40, however i've got HCM on top of it. A healthy 40 year-old simply can't do the same things a healthy 19 year-old can do. Add HCM to that and you have a snowball effect. I've also had twenty years of boozing, smoking, and drugs to help age myself plenty quick.

I've also had doctors suggest to me that having a large gradient simply ages your heart faster. When you think about it, that large obstruction puts a ton of pressure on the mitral valve. Rather than wondering why we started having problems all of the sudden... perhaps we should be wondering how in the heck our poor hearts put up with this as long as it did!? Maybe we're actually the lucky ones who had hearts strong enough to take the pounding for 20+ years before they finally gave up and said 'Hey... need some help down here!' There's plenty of young children with HCM that don't get the luxury of experiencing the 20+ years of blissful ignorance that you and i did.

It was just our time Ronnie.

Take care,

Jim

[Ronnie Major Contributor Find all posts View Profile Close Ronnie]

Re: Heart Murmur

Jim-

You've made some excellent points! I am grateful to have had so many years virtually symptom-free (like you I thought the pain, SOB & unusual heartbeats - were normal) I'm just always seeking to understand the "how & why" of everything.
Interestingly enough, my entire body (internally) has aged beyond my years. I had cataract surgery (both eyes) @ 48. My Internist said my Body seemed older than it is (yet I'm told all the time how Young I look)

I too am a nonsmoker (a little over 1 year) & still think about smoking daily! I lost most of my desire to drink, once I stopped smoking. I was in College in the 60's - so I experienced that time as well! I feel guilty, at times, thinking I brought some of my Cardia issues on by my lifestyle, even tho I know I was born with HJCM!

Jim, I love your posts-you have some very valuable thoughts & you present them so weel!

BE WELL

[mtlieb Brave Heart Find all posts View Profile Close mtlieb]

Re: Heart Murmur

Thanks Ronnie,

It's interesting you mentioned being aged beyond your years, as i was one of the youngest cases of kidney cancer my doctor in Montana had ever seen. You usually don't see this form of cancer until much later in life, even if you're predisposed to get it. Does this mean i have the body of a seventy year-old? Obviously like you, i don't look my age as you may have noticed from my picture.

I used to do a lot of writing when i was younger... mostly a blend of science fiction and humor, similar in style to Douglas Adams (The Hitchhiker's Guide to the Galaxy, etc.). Since HCM got me booted out of archaeology, i've been doing a lot more writing again, but alas the OVR doesn't pay to send you to writing school. They want you to be a bit more marketable i'm afraid. But hey, if J.K. Rowling can write the Harry Potter books while on welfare... i should be able to take this HCM thing and publish something as well.

Have fun,

Jim

[Pam Alexson Moderator Find all posts View Profile Close Pam Alexson]

Re: Heart Murmur

Jim , you are a wealth of info and a great read. Have you noticed since your myectomy even more ideas and thoughts rapidly firing off in your brain and in a very orderly fashion? I say this because that is what I really noticed right away , I was having all these inventions pop into my mind and very intense thought processes. Boy that increased cerebral perfusion really makes a difference, do you think?
Or maybe I'm nuts.
Take care. Pam