I remember before Justin was 2 the echo tech at CHOP told us Justin broke the echo record at CHOP with 53
Undiagnosed valve deaths ?!
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I remember before Justin was 2 the echo tech at CHOP told us Justin broke the echo record at CHOP with 53
W
westie
heath system could not cope
heath system could not cope
.
with the benefit of hindsight, even apparently healthy people should be having an echo every 5 yrs? or so: and even an angiogram at say age 50 would be a good idea too.
but i am sure there are just not enough echo machines and cardiologists to do even a fraction of the extra workload this would represent. the nz health system is struggling at the best of times and healthy people presenting themselves for echo's and angiograms would get laughed out of the door!
probably the health insurance co's have a requirement of "sufficent cause" for testing and gps might be reluctant to refer healthy people to cardiologists for echos; sometimes it is hard for even a seriously ill person to get an early appointment with a private cardiologist
heath system could not cope
.
with the benefit of hindsight, even apparently healthy people should be having an echo every 5 yrs? or so: and even an angiogram at say age 50 would be a good idea too.
but i am sure there are just not enough echo machines and cardiologists to do even a fraction of the extra workload this would represent. the nz health system is struggling at the best of times and healthy people presenting themselves for echo's and angiograms would get laughed out of the door!
probably the health insurance co's have a requirement of "sufficent cause" for testing and gps might be reluctant to refer healthy people to cardiologists for echos; sometimes it is hard for even a seriously ill person to get an early appointment with a private cardiologist
You are right, one of the reasons we don't push for echos on every baby is logistically it is if not impossible, then it is next to it. even IF every hospital was capable of doing an echo, (and had qualified echo techs) where would the thousands doctors come from that would spend all day just reading the echos?
debster913
Well-known member
Food for thought...
Food for thought...
It seems that many of us here were diagnosed at birth. Had it not been for my heart attack in the birth canal, the doctors may have thought nothing of my murmur. I had no other obvious heart problems growing up other than the birth event. And yes, that first year was rough, but that was because of the MI itself.
I wonder what might have happened if I hadn't had that heart attack. Blessing in disguise...?
Food for thought...
It seems that many of us here were diagnosed at birth. Had it not been for my heart attack in the birth canal, the doctors may have thought nothing of my murmur. I had no other obvious heart problems growing up other than the birth event. And yes, that first year was rough, but that was because of the MI itself.
I wonder what might have happened if I hadn't had that heart attack. Blessing in disguise...?
ALCapshaw2
Well-known member
Your last sentence about the insurance company hesitation to pay answers the Question I did not ask.
You may have been able to avoid so many echo's by taking copies of your previous Echo Reports *and Tapes* for the other Doctors to view.
L
Lisa in Katy
Here is an interesting link about testing:
http://www.abc.net.au/science/articles/2001/11/13/414717.htm?site=science&topic=latest
I expecially like the next to last paragraph:
"Dr Garlick recommends that people continue with their exercise routine. While there is a small chance it might kill you, it is more likely to save your life."
I think the issue with sudden deaths has more to do with completely undiagnosed problems, or problems that were diagnosed at birth and never seemed to worsen so weren't really followed. It also has to do with people aged 20-40, especially guys, who rarely go to the doctor!
Echos and EKGs aren't the cure all because they don't show everything. I had a friend in high school who had a murmur at birth. By the time she was a few years old, it had disappeared. Fast forward to 20 and she enlisted in the Air Force. She got through all of their tests, which included a Stress EKG and an Echo, without an issue. A few months later during a training exercise, she passed out. They diagnosed her with an aortic valve problem (BAV?) and discharged her. Granted this was a long time ago, and Echos have changed some since then, but it still makes me wonder what it would have taken to find her problem prior to her collapse. The newer heart scan, which is a fancy CT scan, might be a better test, but it seems to focus more on calcium and blockages. In any case, there is no way that insurance companies are going to cover echos and heart scans for healthy people so it would be out of pocket. There are about 12 deaths in the US of young athletes each year that are classified as Sudden Cardiac Death, and while one is too many, it's such a low % that the end doesn't justify the means for expensive, mass testing. If my problem was congenital, I would have had my kids tested.
For people past their youth, an EKG every few years would probably be covered. Anything else would probably depend on your history.
Found this on the Mayo Clinic site: "Routine use of heart scans on people who don't have any symptoms of heart disease is not recommended by the American Heart Association or the American College of Cardiology."
http://www.abc.net.au/science/articles/2001/11/13/414717.htm?site=science&topic=latest
I expecially like the next to last paragraph:
"Dr Garlick recommends that people continue with their exercise routine. While there is a small chance it might kill you, it is more likely to save your life."
I think the issue with sudden deaths has more to do with completely undiagnosed problems, or problems that were diagnosed at birth and never seemed to worsen so weren't really followed. It also has to do with people aged 20-40, especially guys, who rarely go to the doctor!
Echos and EKGs aren't the cure all because they don't show everything. I had a friend in high school who had a murmur at birth. By the time she was a few years old, it had disappeared. Fast forward to 20 and she enlisted in the Air Force. She got through all of their tests, which included a Stress EKG and an Echo, without an issue. A few months later during a training exercise, she passed out. They diagnosed her with an aortic valve problem (BAV?) and discharged her. Granted this was a long time ago, and Echos have changed some since then, but it still makes me wonder what it would have taken to find her problem prior to her collapse. The newer heart scan, which is a fancy CT scan, might be a better test, but it seems to focus more on calcium and blockages. In any case, there is no way that insurance companies are going to cover echos and heart scans for healthy people so it would be out of pocket. There are about 12 deaths in the US of young athletes each year that are classified as Sudden Cardiac Death, and while one is too many, it's such a low % that the end doesn't justify the means for expensive, mass testing. If my problem was congenital, I would have had my kids tested.
For people past their youth, an EKG every few years would probably be covered. Anything else would probably depend on your history.
Found this on the Mayo Clinic site: "Routine use of heart scans on people who don't have any symptoms of heart disease is not recommended by the American Heart Association or the American College of Cardiology."
ALCapshaw2
Well-known member
The problem with that philosophy is that DEATH is sometimes the First Symptom of a Heart Problem!
Unfortunately, as mentioned earlier, it all comes down to Costs and Percentages. "Sorry for your loss" just doesn't seem to 'cut it' for those at the tail end of the Bell Curve!
Marty
Well-known member
Unfortunately there is more health care available than we can afford. Some tough decisons must be made. Look forward to rationing. Just who decides who gets what should be interesting.
Yeah..shoulda got a mechanical valve,huh??
Gail in Ca
Well-known member
I think alot of doctors aren't very good at hearing murmurs. I saw 5 different doctors of many specialties before a family practice doc heard my murmur, and it was such that the nurses at Stanford wanted to hear it before my surgery because they don't get to hear a murmur of that grade much. It obviously was major since I had a leaking aortic valve and an aneurysm of 6 and mitral valve leakage as well.
Gail
Gail
Even in developed countries the medical system still lets people down. A friend of our family had many symptoms - SOB, rhythm problems etc. but her local cardio insisted on treating her with medications only. My mum recommended she see my cardio in Melbourne. On listening to her heart, my cardio ordered an echo to be done that day and on seeing the results immediately admitted her to hospital where she had an AVR done. She had FULL private health insurance but in this case was let down by her intial doctor - you have to wonder if she had not pushed for a second opinion what her outcome might have been.......
PS: I concur with those who wondered about the lady who passed away with undiagnosed severe MVP. I have severe MVP and my heart murmur is so loud that every doctor always picks it up and comments on it. Surely she must have seen a GP for some sort of check up at some stage???
PS: I concur with those who wondered about the lady who passed away with undiagnosed severe MVP. I have severe MVP and my heart murmur is so loud that every doctor always picks it up and comments on it. Surely she must have seen a GP for some sort of check up at some stage???
AndyChas
Well-known member
I’ve thought about this too; in hindsight, I’m surprised that I even went to the doctor when I did, about a month after the one physical sign I’ve had that something was wrong (passing out, albeit while exercising quite strenuously). I can honestly say that I haven’t even had a cold for a couple of years and I only went to the doctor after being exhorted to do so by a medical student who struck up a long conversation with me one afternoon (she was smart, cute, and half my age so it was all very flattering until it became clear that she actually wanted to save my soul; oh well).
I’ve also wondered at the divergent interpretations I’ve received in relation to echo results, particularly advice regarding the timing of surgery (the need for which is beyond doubt). In addition to a TEE, I’ve had three echoes recently, not counting the one where the doctor accidentally kicked the machine’s power lead out of its socket before she had saved the file! One thing that I haven’t been told after all this testing is my life expectancy without surgery, although I now realise that when doctors say something is ‘very bad’ they actually mean this can/will kill you.
Andy
I’ve also wondered at the divergent interpretations I’ve received in relation to echo results, particularly advice regarding the timing of surgery (the need for which is beyond doubt). In addition to a TEE, I’ve had three echoes recently, not counting the one where the doctor accidentally kicked the machine’s power lead out of its socket before she had saved the file! One thing that I haven’t been told after all this testing is my life expectancy without surgery, although I now realise that when doctors say something is ‘very bad’ they actually mean this can/will kill you.
Andy
bookjp
Well-known member
I would like to know how many people here had no symtoms whatsoever.I mean nothing.All I did was go for what I thought was a routine physical and they sent me for an echo and said I had severe aortic stenosis.I'm no doctor but looking at the echo images all I see are faint images or shadows.Two days earlier I was playing two hours of basketball with thirty year olds(I'm 56).I feel like I did twenty years ago.Never been short of breath,never dizzy.never had a heart pain nothing.Its kind of hard to accept!!
Nupur
Well-known member
bookjp, I think the more athletic you are, the less symptoms you experience.
I never had symptoms that I associated with heart issues, the palpitations I felt, well... I just thought I am having anxiety attacks or something like that.
I never had symptoms that I associated with heart issues, the palpitations I felt, well... I just thought I am having anxiety attacks or something like that.
I was diagnosed with heart murmur in 1970...no one told me to pre-medicate before any dental work and all my life, I went three times a year, not mentioning filling jobs. One doctor warned me that I would need surgery one day, but no mention of premedication until 1986 after the damage was done to my aortic valve which with time affected my mitral valve.
Sorry Deb about your friend.
Sorry Deb about your friend.
L
Lisa in Katy
Eva, I wonder when premedication became the norm. I had RF, which caused my mitral valve deterioration in 1976. Premedication was never mentioned to me until 1987. Granted I was on therapeutic antibiotics during that entire time, but in 1987 the dentist I went to insisted on the quadruple dose prior to cleaning.
Since you heard it in 1986 and I heard it in 1987, it makes me wonder if that's when it became standard.
I had no symptoms that I recognized other than a very loud murmur that covered any heartbeats. No one could miss that though since it could be heard with a naked ear and felt with a hand to my chest. It was much louder than the ticking I have now. I couldn't wear earphones or have hearing tests because all I could hear was swish, swish, swish. I always got a kick when a new doctor put his stethoscope on my chest and I could see his eyes get real wide. Some would even jump back like it was going to explode!
The reason I say no symptoms I could recognize is because after recovery from surgery, I realized that I didn't get winded near as fast as before.
Since you heard it in 1986 and I heard it in 1987, it makes me wonder if that's when it became standard.
I had no symptoms that I recognized other than a very loud murmur that covered any heartbeats. No one could miss that though since it could be heard with a naked ear and felt with a hand to my chest. It was much louder than the ticking I have now. I couldn't wear earphones or have hearing tests because all I could hear was swish, swish, swish. I always got a kick when a new doctor put his stethoscope on my chest and I could see his eyes get real wide. Some would even jump back like it was going to explode!
The reason I say no symptoms I could recognize is because after recovery from surgery, I realized that I didn't get winded near as fast as before.
Adrienne
Well-known member
I started premedicating in 1983 after a doctor sent me for an echo and said I had a mitral valve prolapse (before that I just knew I had a murmur). He told me it was important to take prophylactic antibiotics for dental appointments or for abdominal surgery (anything "dirty").
bookjp
Well-known member
Al I have an appointment with my surgeon Jan 22nd.I think after the TEE and ct scan I had Jan. 15.That he will tell me I need surgery soon.The young russian nurse that gave me another echo just before the TEE test said that I had the worst calcification on my bicuspid aortic valve that she had seen.I'm just hoping seeing she was young that she hasn't seen to many.I STILL FEEL GOOD!!!!!!Thats my motto and I'm sticking to it.Thanks for the reply.
Just to continue this topic, does anyone have a parent or sibling with any kind of heart issues?? Both my parents (the are now 81yrs old) have had valve replacement: my mom at 72yrs (mechanical) and my dad at 77 yrs (tissue). Neither one of them had a murmur or bicuspid valve (Cardio at the Brigham in Boston requested that I get both parents operating and pathology reports from the hospitals where they had their surgery. I think the Cardio was kind of disappointed to see neither parent have a bicuspid valve!)
Marguerite53
Premium Level User
Perhaps you should get a copy of your echo reports sent over to a different cardio and have them reviewed as a second opinion. If two separate cardios find the same degree of stenosis, you might be more persuaded. Emotional acceptance of this is very important. Check with your insurance to see if they accept (they should) second opinions, and go get one. You will feel more secure if someone else tells you the same thing.
Marguerite
