Undiagnosed valve deaths ?!

[Woodbutcher]

Not a very cheery thread, but I was wondering, having just read about the sad passing of Debsters friends friend (?) from a prolapsed mitral valve. Also because I was only diagnosed because I'd not been to the doctors for years and years and didn't even know who my doctor was ! So I decided, even though I had no symptums (is that spelt right, it dosn't look right!) to go and have a check up as I'd passed 40 and thought I should have a once over ? "Oh, that's interesting" said the doc when listening to my heart. Interesting !? I didn't want an interesting sounding heart !!
So, I went for a scan and the rest as they say, is history.
What I was wondering is are there any statistics for the numbers of people who sadly die undetected until it's too late ? This must be stupidly common because I've heard of a few myself and of course I could have been one of them, especially when the cardio estimated I only had a few months to live without surgery ! "Try not to worry yourself though, if it happens you'll not know anything about it!" With cardios like that you dont need enemies !?
Why aren't we all screened for heart valve problems ? It's not hard for a doctor to hear a murmer ?! Mine would have had a murmer for years, but I'd probably not been to a doctor for atleast 20 yrs if not more !?
Just a thought....

Justin

 

[VikiVix]

Undiagnosed

Undiagnosed

I had a heart murmur all my life which doctors only listened to with a stethoscope and I'd had a few electrocardiograms (EKG). They all said it was only slight and I even had shoulder surgery and major dental work before. Finally at 60 years old (2years ago) a cardiologist did an echocardiogram and discovered the problem with my aortic valve which he said was a birth defect that worsened as I aged. I almost didn't live beyond 60.
Viki

 

[Duff Man]

with echocardiogram machines being so ubiquitous now, it seems like there's no real good reason for it to happen anymore. It seems like everyone should have an echo every decade or so.

 

[Karlynn]

Would be interesting to see. Al Lodwick (our warfarin guru) has said that most sudden deaths of athletes on courts or fields is due to unDX'd valve problems. But the news almost always reports them as a "heart attack".

My first thought on reading the news of Deb's friend's friend was "I wonder when her last physical was." I'm guessing it had been years and years. If not, then the doctor should be investigated. A valve that is "almost gone" makes a horrible racket. My mitral prolapse sounded like a wind tunnel when listening through a stethoscope. There was no doubt something was wrong with my heart when listening to it.

 

[ALCapshaw2]

There was a post some years ago about some high schools having their student athletes undergo a 'screening echocardiogram'. (I'm thinking a medical facility opened up their echolab on a weekend for the students to be tested at a reduced rate).

This sounds like a Good Idea that should be implemented on a wider scale!

'AL Capshaw'

 

[debster913]

My first thought on reading the news of Deb's friend's friend was "I wonder when her last physical was." I'm guessing it had been years and years. If not, then the doctor should be investigated. A valve that is "almost gone" makes a horrible racket. My mitral prolapse sounded like a wind tunnel when listening through a stethoscope. There was no doubt something was wrong with my heart when listening to it.

To clarify...This young gal was diagnosed with a heart murmur when she was a child, but the doctors felt that it was not a problem, and nothing to be pursued further. I think that was a mistake! I really don't know the last time she saw her doctor, though, but I do know she had to when she was pregnant with her youngest child three years ago. I know that my valve sounded like a broken washing machine when it was failing.

Certainly not to criticize this woman's family, or anyone else for that matter, it seems that many times patients take a passive role in their health and expect their doctors to be the end-all decision maker/formal authority. The young student I mentioned in another thread this week has no idea how severe or not her arrythmia/murmur is. She says the doctor doesn't explain anything to her or her mother.

At the same time, I feel lucky that I'm alive, and a bit guilty. Why did this wonderful young woman die of valve disease? If only she'd had symptoms, then maybe she would have been able to have surgery and live a long, healthy life for her children? Why did I have symptoms and end up having surgery? I couldn't get to sleep because this was wearing on my mind.

AL mentioned the high schools screening student athletes for heart problems. I already knew I had a valve problem when I wanted to participate in track and field in high school, so my pediatric cardio ran a series of tests before even considering letting me run. I was allowed to, but the following year when I saw my cardio for my physical, he ran all the same tests again before pulling me off the team. In short: running competitively was ruining my valve, and he said: "I'm not going to put a new valve in a healthy 15-year-old." I think it's a great idea for an echo to be part of the pre-screenings for high school sports. The kids have to get a health clearance at my school, at least, before they can play football, water polo, etc. An echo could save a life.

 

[Dina]

My best friend died of some type of arrhythmia at 34 yo. She had never
been known to have any heart probs or any health problems at all. She
kept up with routine physicals and took care of herself. She has been
gone now for 7 years and I still have no real clue as to what happened.
I guess she had some abnormality that went undiagnosed. I don't know
if she had ever had an echo,but I don't believe she did.

 

[Dina]

A valve that is "almost gone" makes a horrible racket. My mitral prolapse sounded like a wind tunnel when listening through a stethoscope. There was no doubt something was wrong with my heart when listening to it.

Yes. I don't know how any doctor(or layperson for all that) could miss it.
My 'absent' tricuspid valve(from endocarditis) was so loud it did not
sound even remotely like a heartbeat. Just a big swishing noise that
actually drowned out all other heart sounds it was so loud.
Post-op, I can actually distinguish it as a heart beat again

 

[Teresa]

So sorry to hear about this woman. I have always had a heart murmur. My first Echo was 14 years ago. My Dr (for the last 7 years) never suggested that I go for another one and I never thought to question it (I know sooo much about this stuff now!). Last year (2008), I asked my Dr if I should get an Echo-I heard that you do not have to pre-med before dental exams. The rest, is history. I had 5 Echos in 2008.

 

[ALCapshaw2]

I had 5 Echos in 2008.

How did you get your Cardiologist to order FIVE Echos in one year?

I've never heard of anyone getting that many. Anything over 2 is almost unheard-of from my reading of the posts on VR.com

'AL Capshaw'

 

[Dawn-Marie]

I had a really loud heart murmur from the time i was a small child, but they really never checked my heart for any problems. The doctors just told my parents it was an "innocent heart murmur". When i had bone cancer in 1980 they did a heart cath to see which blood vessels were feeding the tumor, but that never showed that i had any heart problems. Then in 1997, during a routine physical, my doctor listened to my heart and neck and he heard something he didn't like so i had an echo and he told me that i had mild aortic stenosis, but that it would never bother me and not to worry about it. They never checked me again. Then i went into severe CHF in Nov., 2007 and they said i had critical aortic stenosis, but they never found out i had a congenital bicuspid aortic valve until April, 2008 when i had a TEE. Dr. Strzalka (the cardiac surgeon i would have had) said a lot of doctors really "dropped the ball" when it came to my care. He said i should have had the surgery back in 1997 when they first found out i had it. Even though it was mild at the time, he said they should have known that since i am a low level quadriplegic that my breathing and coughing issues would get worse, and that they should operate before that happened. Back then i still could cough up phlegm. Now i can't cough at all. I also have Pulmonary Hypertension now, which complicates things further. So, now i'm considered inoperable and, unless something happens to make it so they can do the percutaneous aortic valve on people with bicuspid valves (which isn't too likely to happen soon enough to help me) my doctor told me that i will probably die before this year is over. It makes me mad sometimes that all these doctors that i've had in the past have not diagnosed me correctly and helped me when it was possible to fix my valve.

 

[Teresa]

Sorry Al, I recounted and it was only 4. The first one in May which showed Severe Aortic Stenosis (WHAT!), then my GP sent me to a Cardiologist (who ??!!) who had me do a Stress/Echo in June. Read here that people with Severe Aortic Stenosis shouldn't really do a Stress test so I said goodbye to her and saw my parents Cardio in Sept who also did an Echo. From there she referred me to the Brigham in Boston to ANOTHER Cardio who had me go through a CT Scan (horrid) and another Echo in Nov. I guess I was over due. And yes, my insurance has been dragging their feet on paying.

 

[Teresa]

Dawn-Marie, I have never heard the term "Bi-cuspid Valve" until my echo last May.

 

[Nupur]

Sudden death

Sudden death

I have been thinking about this a lot lately (no wonder Xanax pills are disappearing), and I have been trying to find articles and papers on the risk of sudden death for valvular disease (esp mitral).

For me personally, nobody had ever heard a murmur until I was pregnant. I was 35 at that time and they said apparently sometimes you hear it when pregnant, so no big deal. After that, for almost 6 years I never had a physical. When I went for other reasons (like sinus infections and stuff like that), I mostly saw my PCP or her assistant and a couple of times they said "Did you know you have a murmur?", but again no big deal... until.. I went for a physical this last June because I thought at 41 I need to start doing mammograms and my PCP sent me to do an ECHO and well, as Justin, said, the rest is history. You know the funny thing, my cardio went back and checked the records of my visits to the clinic and was very surprised that nobody reported serious murmur and wanted to act on it even in 2006! He said "there's no way to miss this, it's so bad", so I wonder why the doctors don't bother when someone is coming to them with other problems.

Last year, in my son's preK program, a dad died suddenly one Friday nite, no prior history of anything, late 30's and very athletic. I don't know what the cause was, makes me think now. If I had not gone for this physical, I would have faced a situation like that, because I was inspired by a few moms training for half marathons and was starting to run again, and was pushing myself to "get in shape"! Six months later, I get major thumping and flipping (don't know what those are) in my chest after power walking more than 30 minutes.

Anyway, I think the patient is to blame for not doing physicals for a long time, but still, why don't doctors act proactively when they hear a murmur? My first cardio wouldn't even order a second ECHO to get accurate measurements! I feel like in this health care system, unless you push yourself, they'll neglect you until you end up in the ER.

OK, enough rambling, time for a Xanax to stop thinking about sudden death : )

 

[Nupur]

Deb, so sorry to hear about your friend! I think pregnancies are very hard on valves, because of the major increase in blood volume. They should always check women after birth, especially if they have MVP already. There was a mom posting a while ago, she was going to give birth to her third child in Feb and then go into surgery immediately, I hope she is doing ok!

For moms with young children, their health sadly becomes low priority, and they often ignore warning signs, I know I did. I am so sorry for your friend's family!

 

[Marguerite53]

Good thread, thanks.

I paid a hefty cash fee for an echo on my daughter as she entered college as she was going to be playing volleyball. I did not want it going through insurance. I had my 2 sons go through a university study for free echos. As I've reported earlier, each child had a different kind of heart! The oldest, son, has a minimally enlarged heart (for no detected reason; cardiologist said nothing to worry about, just statistically abit larger, but he is an odd duck with huge Abe Lincoln hands and since they say your heart is the size of your fist, I'm going with that for now!). Our middle son has mitral valve prolapse. The daughter (a third team All-American I might add ) had some aortic regurgitation uncovered in the echo. The cardio, without seeing her, advised her to use antibiotics for dental work, etc. but said she was totally safe to play sports in college. Until this thread, it never occurred to me to have an echo, now that her college career is winding down. So I THANK you (Woodbutcher and Debster) from the bottom of my post-stenotic-bicuspid-aortic valve! I'm getting her in again for a listen, at least, if not a new echo.

I guess I am pretty confused how one man and one woman could create 3 children and each has a different heart issue. Isn't that abit strange?

As far as hearing the murmur, my condition was from birth (bicuspid, as decidedly discovered by the surgeon when he took it out) and yet no one heard a murmur in me until I was in my 20's. As it went stenotic, it used to wheel unsuspecting doctors across the room with alarm, it was so noisy!!

I think it would be excellent for everyone to have an echo screening and then 5 year follow-ups beginning in childhood. I wish we could make this happen.

And, Deb. I'm so sorry for your sad experiences. I'm sorry that your sadness caused some lost some sleep. Life is a puzzle, isn't it.

Marguerite

 

[bookjp]

Had a high school physical for football when I was sixteen.The doctor detected a heart murmur and told me to do ten jumping jacks.Rechecked my heart and told me I was good to go.Never gave it another thought till two months ago when my wife bugged me into getting a routine physical(first one in six years) the doctor detected a murmur and set me up for an echocardiograph.Diagnosis severe aortic stenosis .8cm.Figured when I saw the cardiologist that he would prescribe some meds to clear up the problem.Cardiologist tells me only treatment is open heart surgery.WHAT!!!!!!! Never been sick in my life and no symptoms what so ever.Just got done playing basketball two nights earlier with a bunch of thirty something kids(I'm 56).Now I'm doing research on the subject.

 

[Lynlw]

with echocardiogram machines being so ubiquitous now, it seems like there's no real good reason for it to happen anymore. It seems like everyone should have an echo every decade or so.

I hear you, Hell 40,000 babies are born with Congenital heart defects each year in the US and 10% of them will die ( TWICE as many children die from CHD as ALL forms oc Pediatric cancers combined) and many many babies that do die is because there is no routine screening for newborn hearts so babies go home and by the time they have symptons they are doing so bad either recovery is awful or their hearts are too damaged or they just die before they get to the hospital
We've been fighting for years to get some kind of routine screening for newborns hearts, not even an echo but just a basic ekg, pulse ox and BP on all 4 limbs would pick up many problems that are missed now. I contacted the March of Dimes years ago, because they are supposedly the go to people for birth defects and was told We have screening for CHD it is called a stethascope" needless to say I nevr did another walk for them

So yes I wish they would screen better for valves, but when completely backwards hearts or missing ventricles or other major parts of the heart are missed, all of the time, I don't have much hope.

 

[ALCapshaw2]

Had a high school physical for football when I was sixteen.The doctor detected a heart murmur and told me to do ten jumping jacks.Rechecked my heart and told me I was good to go.Never gave it another thought till two months ago when my wife bugged me into getting a routine physical(first one in six years) the doctor detected a murmur and set me up for an echocardiograph.Diagnosis severe aortic stenosis .8cm.Figured when I saw the cardiologist that he would prescribe some meds to clear up the problem.Cardiologist tells me only treatment is open heart surgery.WHAT!!!!!!! Never been sick in my life and no symptoms what so ever.Just got done playing basketball two nights earlier with a bunch of thirty something kids(I'm 56).Now I'm doing research on the subject.

An Effective Aortic Valve Area of 0.8 cm sq is considered by MANY Cardiologists and Surgeons as a "trigger" for recommending Aortic Valve Replacement Surgery.

For your next 'opinion', I would recommend interviewing Surgeons.
They seem to have a better 'feel' for the timing of surgery IMO.

FWIW, MANY patients are totally unaware of symptoms until their hearts become severely damaged, especially patients who are in good physical condition and can 'coast' on low cardiac output. Only *after* Valve Repair or Replacement do they say, "Oh yea, I guess I was having symptoms, I just didn't recognize them at the time".

Most of the members of VR.com (and Surgeons) are proponents of getting your valve 'fixed' BEFORE permanent damage is done.

'AL Capshaw'

 

[Nancy]

Al Capshaw asked How did you get your Cardiologist to order FIVE Echos in one year?

Joe had five and more in a year. But then he had severe problems, and these were done when he went to the ER or entered the hospital. He had so many, he was able to request which tech he wanted.