new here...questions

[DanaG]

Hello. I was just visiting your website, and had a few questions that I wondered if you could answer regarding cardiac problems and genetics.

My family is chock full of arrhythmic messes…. All on my maternal side. My grandfather, now 72 years old, was diagnosed in 1972 with obstructive hypertrophic cardiomyopathy. We’ve had QUITE a few close calls with him, but with recent developments and an ICD, his heart beats more “normal” now than it has in years, although he will probably never again gain a sinus rhythm. His biggest problem now is CHF, brought on by the years of stress placed on his heart by the arrhythmias.

All 3 of his children, and his 7 surviving grandchildren have had multiple EKGs and echos, and have been told we’re all clear of HCM. My question is this…

Ironically, in 1987, my first cousin was born with Tricuspid Atresia and passed away at 9 months old. His sister was born with a VSD. Myself, my mom, and both my aunts have had issues with tachycardia. Both of my aunts have had bouts of atrial fib, where I have a VERY high heart rate normally and bouts of PACs. My mom was hospitalized with a severe arrhythmia in 1991, but has since had no problems.

Could all these things be related?? Is there any way the Drs are missing something? I know that I’ve had MANY EKGs and an echo a year until I was 21. My tachycardia was blamed on panic disorder.



Any answers would be appreciated.



Thank you!

Dana

[Reenie]

Re: new here...questions

Dana, my only suggestion is that you get screened again. Many people are told they are having panic attacks, anxiety, depression, asthma, or a myriad of other maladies before they realize that the symptoms they have been having are most likely from HCM. There are some really good cardiologists out there. Call the office, number at the bottom of this page, and talk to Lisa. She can help you get in touch with one.

Reenie

[Glen Beamish]

Re: new here...questions

First Welcome.
Second, they sure sound related.
Have you ever gone to an actual HCM specialist or have you been seeing a regular Cardiologist?
If you've never seen an HCM specialist, it's time.

[DanaG]

Re: new here...questions

I've seen my grandfathers cardiologist (when i was a teenager) and his electrophysiologist (Dr. Winters, he's pretty well known) so i'm looked at in my family like a hypocondriac! My mom feels if they knew my grandfather's history, and cleared us, then we must be cleared.

My concern is what came first, the cart or the horse....I don't remember having anxiety until my heart started doing weird things...

The other thing is, most families don't have any congenital heart defects diagnosed, and within 3 generations we have 3 different ones? Just seems to ironic to me.

Thanks for the input!

Dana

[DanaG]

Re: new here...questions

The other question i have is this....

We've ALL been told by our respective dr's/cardiologists that if HCM isnt seen on an echo by the end of puberty, it won't develop. Is that true?? My grandfather showed no signs of anything until he was late in his 30s, not diagnosed until 40. He was in the air force in his 20's and had military quality medical exams. Could he really have had it all those years and have no symptoms?

Thanks!
Dana

[Cynaburst]

Re: new here...questions

Dana - That is NOT true. HCM can manifest at any time. Although puberty is common, it can show up first at adulthood. I wasn't diagnosed until I was 35. I think you should call Lisa - she is in the office tomorrow. She is in New Jersey also, and can point you to a doctor who can screen you and your family properly. I think you are smart to be questioning things.

[Glen Beamish]

Re: new here...questions

Dana, Tachycardia is very dangerous and for that alone you should be seeing a specialist.
In my early 20s I was also suffering from anxiety and it took seeing several different cardiologists before I found an HCM specialist.
They also indicated they didn't think it was heart related, but it was and I think it's fairly common among HCMers as I'm sure others here will tell you.
HCM can raise it's ugly head at any age although puberty seems to be a favorite time for it to appear.
Old Burt didn't get diagnosed until he was 72. (I know I'm going to here about that).
In any event I think you have several reasons to get yourself and other family members to an HCM specialist and I don't think you are a hypocondriac.

[DanaG]

Re: new here...questions

Thank you all for your suggestions....

I worry about myself, but also by brother (who is 2 years younger and going to be a gym teacher) and my young cousins, who are all very active in sports. My one aunt, the one who had the children with the congenital defects has 3 surviving children. Her daughter has the VSD but her 2 surviving sons have been told theyre clear, even though theyre only 14 and 16. They both play a ton of sports, and that scares me.

Thanks! I'll try to get ahold of Lisa...

Dana

[Burton Borrok]

Re: new here...questions

Hi DanaG,
This is “Old Burt” talking to you from the depths of my easy chair – (wish I had a rocker, a stick of wood and a knife.) (And Glen is wrong – I was only 71 when I was finally diagnosed with Hypertrophic Obstructive Cardiomyopathy (HOCM) – and there is still ‘some’ differences of opinion remaining today.)

Of course HCM / HOCM is a genetic disease, so we that have it were born with it. I was told from the age of four on that I had an athletic heart and a murmur, but I was expected to outgrow it. I served in Korea, and passed all the normal physicals, but over the years I became more and more affected by it. Like most of us, it was put down to being out of shape, or one of my many other ailments. It wasn’t until I was in the hospital and had an ‘episode’ of HOCM that I was finally diagnosed by a cardiologist who knew about this condition.

You see, only one in five hundred (on average) have this condition, and as in my case, many do not even know they have it. Consequently, it becomes a tiny corner (or a non recognized corner) of a cardiologist’s practice - and they obviously spend almost all their study time on the maladies they encounter every day. Most cardiologist’s therefore have only a sketchy idea about the disease, and since there has been much progress of late, what knowledge they do have (if any) is generally out of date and fraught with inaccuracies and half truths.

There are some cardiologist’s (lucky for us) who you might say ‘specialize’ in this malady, and are completely up to the mark in its identification, care and maintenance. These are the people we should see if we want an accurate diagnoses and proper treatment. I feel confident Lisa can help you find such a doctor in your area. By all means call her; she is generally in on Tuesdays and Thursdays.

Good luck in getting a firm diagnosis of whatever it is your family has; and please come back and let us know how you make out.
Burt

[DanaG]

Re: new here...questions

Thank you!

I'll be sticking around, I am very interested in the developments of the disease. I have been doing research on it since I was in high school, for my grandfather's sake.
His episodes were first diagnosed as heart attacks. Then, he "browned out" one day at work and the emergency room doctor thought he should have a cath. That was when he was finally diagnosed. Amazingly, they kept telling him he was having heart attacks, even after 4 or 5 of these "episodes".

I'm very interested in the development of treatments. My grandfather is the most precious person in my life. He's survived many a bad arrhythmia, 6 1/2 years of CHF, and I intend on him keeping it up!

Thankfully, last year's echo was what the Dr said was the best one he'd seen in 10 years. That to me is amazing. Also, he hasn't been shocked in almost 4 years from his ICD, which tells me he's on the right meds now. He knows when he needs to take an extra water pill to get the extra fluid off when he starts to feel puffy, and that's been keeping him out of the hospital.
I am so thankful for the research that is done on this disease, it has afforded me to be in my late 20's and still have my pop. God willing, he will be able to see me get married in May, when in 1972 he was told he probably wouldnt live another 10 years. I am so thankful.

[Debbie]

Re: new here...questions

Hi Dana,

Jusy wanted to comment about grandparents. My Grandma is 85 years young and still kicking like a stallion! A little older than your "pop", but I am 40, so there's the difference.

She goes to the same cardiologist as me, and he says her heart is like that of a 50 year old.

In fact, funny story. One day I went for my 3 month visit, and my Grandma had been the appt. right before me. He came into me and says, "too bad you don't have her genes!".

Anyway, I go see her every week, and we play games and enjoy each other. Grandparents are awesome! I hope your Grandpa does great, and that you get your dream of having him at your wedding.

Debbie

[Lisa Salberg]

Re: new here...questions

Dana -
In short YES it is highly likely that you all have the gene for HCM and SOME form of the condition. Call the office and we can go over this in greater detail.

Best wishes,
Lisa

[DanaG]

Re: new here...questions

Thanks Lisa,
I'll try to call today. One question, is there any genetic testing for this yet?

Dana

[Sarah]

Re: new here...questions

No real testing --you can't go to the doctor and say you want an HCM test. There is one research lab doing a study but there is no guarantee you will get a result (they've had my blood for years and no word).

You mention, in your first post, just ekgs. Everyone must have echos to be sure if it is HCM or not; an ekg is just not enough. Also, it can develop at any age. The belief that it would only develop during puberty is obselete. HCM can pop up at any age while it is merely more common to show up in the teens.

good luck and keep us posted,

s

[Reenie]

Re: new here...questions

Everyone has already given such good advice, but I wanted to touch again on the disease not taking shape until later in life. I've had this discussion with my sister in law. Her brother, my husband, has HCM. We've talked before about how her daughter and she need to be tested every 5 years or so to see if they develop HCM and she had been told by the general practitioner that either you're born with it or you're not. If you have been cleared then you're good to go.

Granted, Sister In Law 46 and still clear. She's had some really specific heart function tests because she's going through chemo right now, so she probably doesn't have HCM, nor will her daughter. But to think that because Courtney was clear when she was 9 so she will always be clear baffles me. I've sent the HCMA physicians packet to the GP's office, but apparently it wasn't worth her time to read it. Frustrates the daylights out of me.

Reenie