Teen Recovered after collapsing at basketball game!

[Lisa Salberg]

Re: Teen Recovered after collapsing at basketball game!

Juli,

I am not sure what is really going on but the tone of your past few posts leaves me wondering.... I hope you are well.

The HCMA does not support echo's on all children because they are not effective, they are costly, they are NOT part of preventative care, they are NOT covered by insurance when there is no indication and they miss the left free wall of the heart and do not identify hypertrophy in that region when NOT done by a specialist... and even when they are they are can be missed thus MRI's are needed.

As for you telling Gordon he is "incorrect"... while you may "disagree" I think you were "incorrect" in this choice of words. No not "everyone" has insurance.. and even if they did echo's are not preventative care for those without indication.

The logic behind the use of the risk assessment form is to permit ALL children the opportunity to identify risk factors - including but not limited to family history to ensure they gain access to full and comprehensive testing in advance of SCA or significant symptoms.

Discussion is healthy - but respectful, factual debate and discussion will get us all a great deal further a great deal faster.

Lisa

[tom531966]

Re: Teen Recovered after collapsing at basketball game!

exactly my point Gordon and doesnt answer my question. How do we better educate the people that matter here and that is the doctors making these mistakes???? How do we get the next me basically from having to wait 45 years to find out what I have? I did things right. I answered the questions. I jumped through the hoops. People on here have to deal with not having insurance. That isnt the case with me I have always had excellent insurance. And because of that always went to what I thought were the best places.

I realize people make mistakes. We are all human. But every single doctor who ever heard my heart murmur for all those years it not once raised a red flag. Not one said. Lets run more tests. I know it was there because I dont ever remember not having the murmur and it is now gone after my myectomy.

Educating anyone is never a bad idea. However educating people can have minimal effect at best. Giving an HCM form to someone who never heard of the condition and has no symptoms it is going in the trash. Even with some of the symptoms it will be limited in its effect. Many of us on here had trouble getting our own families to get checked out and we know they are at higher risk.

Is there a way to get the general practitioners if a person has a murmur or other symptoms to not simply say "its no big deal" but rather send that person for more tests. Thats where it has to start.

[Lisa Salberg]

Re: Teen Recovered after collapsing at basketball game!

Tom,
You have made great points... These points have been taken into consideration in the form we have created - families change, symptoms change and signs (ie murmur) change that is why we seek this form to be completed annually... while your case is the one you know.. in the past 16 years the HCMA has worked with over 5000 families (over 40,000 people) in these we know MANY had signs, symptoms or family histories that were not appreciated as significant and because of this family members died most of which from sudden cardiac arrest. The thought of having one form, while it will not catch ALL it will catch MANY and the cost is negligible...

Here is ONE story... a woman in NJ.. lost her husband to SCA in his early 40's - a few years later her son had a SCA episode and lived - he was diagnosed with HCM - she called us... Nobody - not the doctor or medical examiner - suggested that her sons have their hearts checked after the death of the father... when i told the woman of this form and asked her if the school sent it home... does she think she would have had her son screened she said.. OMG YES I would have done it the next day.... Her son had to endure a SCA and weeks in a coma.... we can avoid this for many and that is the goal.

I could tell you 100's of stories like that one... but there is the phone with my next family to help...

Lisa

[Lisa Salberg]

Re: Teen Recovered after collapsing at basketball game!

Tom.. ya typed faster then me! LOL.. to answer your last post...

We are working on Med education as well... and the frustrating thing is only 25% of us have a murmur at rest... so absents of a murmur does not mean much... We have to educate every level of the issue.. health care professionals, schools, patients, kids, families... it is a huge task and one that is not easily done...

The risk assessment is ONE tool... Drill Dr. Heart a second tool... medical education a third tool.... this website a forth... get the idea? We need many different ways to raise a complex and complicated issues to national attention.
That is why we have proposed legislation in the House and Senate now.. but do to the attitudes in DC it will not move this year.. because we as a Nation want to fight and name call rather then look for solutions to real issues - sad but true.. and before you attach me on being political.. it is an issue both major parties have fallen into... and rather then worry about which side is "right or wrong" we have to agree we are ONE nation and we all must work together.... so spare me the D or R party line... that is not what we are on THIS board for and it divides not unites us. (Tom that was not directed at you.. just a general comment!)


Best to all,
Lisa

[tom531966]

Re: Teen Recovered after collapsing at basketball game!

Lisa,

I understand and agree with everything you said. And I think I think what frustrates us non experts is situations likes this. Both you and Gordon have commented on my posts and neither have answered my question. I agree that any education is good education. But you are only addressing at best half the problem. Getting people to fill out health forms may help. But that isnt my question. My question is what is being done from educating the other side? The doctors. If nothing is being done or going to be done then that is an answer. Because having heard 1000's of stories I am sure you have come across many like mine where people did things right. And still had to wait years for an answer. And be in the right place at the right time. Basically getting lucky. The lucky part is I lived to tell this story.

[Lisa Salberg]

Re: Teen Recovered after collapsing at basketball game!

Is there a way to get the general practitioners if a person has a murmur or other symptoms to not simply say "its no big deal" but rather send that person for more tests. Thats where it has to start.

Tom - I just wanted to note something about your closing line... and I say this with ALL due respect and honestly I am not saying it to "you" but to those who read this board.. and to those who think they "know the answer" to the "problem".

For 16+ years I have been working to educate people (med professionals and others) about HCM.. for over 30 years I have lived with HCM myself... For the past I would say 10+ many companies have attempted to make "for fee" models to find those with HCM (all have failed) and for many years others have tried to raise awareness using things like community based screenings - with limited success and many failures... What is my point? There is NO... ONE answer... there are paths that will lead to change and we must all take an active role in this process... I would venture to bet not many people want to sit in my seat for a day and listen to the heart breaking stories of death, disability and disappointment life with HCM has brought to many of our families... and I would not want ANYONE to think that one simple ...answer...test...doctor...nurse...quiz...questio nnaire... or similar... is all it takes to take away this loss or situation... But together in a process we can build up knowledge, we can share our experience, we can work to change the law and little by little.. day by day... things will bet a little better and one day in the future all these little steps will have made a huge advance in our knowledge, understanding and ability to identify those at risk and with HCM sooner.

In short... it is a marathon.. not a sprint... come run with me!

Lisa


Lisa

[tom531966]

Re: Teen Recovered after collapsing at basketball game!

Lisa,

First of all let me say I admire you for what you do. And no I am sure most people wouldnt want to sit in the seat you have chosen to sit in. It takes a special person to do what you do and I for one couldnt do it. And I will ask you to clarify one thing. You have lived with HCM for 30 years or have known about it for 30 years? I think the answer is the later. I am quite sure I have lived with it for 45 years, this sunday will mark 5 months I have known about it. I undoubtedly have a lot to learn and am not questioning anyones knowledge. That also doesnt mean myself or other people coming into this can not provide new and fresh ideas.

I would be honored to run with with. And thanks to Dr. Jaber and Dr. Smedira I can do so LOL

However...............after ALL of this my question still hasnt been answered. Perhaps I am asking it wrong so I will try yet again. You made the comment "For 16+ years I have been working to educate people (med professionals and others)"

My question is this. What is being done to educate the first line of defense which is the beloved family doctor for warning signs on this condition?

If the answer is nothing then OK. Say its nothing. My point is that if they do not know then they arent going to send a person to the next step which would be a cardiologist, and so on.

But whether you have been doing this for 16 years or 16 minutes you will have a hard time convincing me this is not the best path. Educating both the patient and their first line of defense would save countless more people.

And once again I would be honored to run with you. But to do so I have to know which direction we are going. I have helped educate many people about this in the short time I have known about this. Several medical professionals in fact.

[juli714]

Re: Teen Recovered after collapsing at basketball game!

Juli,

I am not sure what is really going on but the tone of your past few posts leaves me wondering.... I hope you are well.

The HCMA does not support echo's on all children because they are not effective, they are costly, they are NOT part of preventative care, they are NOT covered by insurance when there is no indication and they miss the left free wall of the heart and do not identify hypertrophy in that region when NOT done by a specialist... and even when they are they are can be missed thus MRI's are needed.

As for you telling Gordon he is "incorrect"... while you may "disagree" I think you were "incorrect" in this choice of words. No not "everyone" has insurance.. and even if they did echo's are not preventative care for those without indication.

The logic behind the use of the risk assessment form is to permit ALL children the opportunity to identify risk factors - including but not limited to family history to ensure they gain access to full and comprehensive testing in advance of SCA or significant symptoms.

Discussion is healthy - but respectful, factual debate and discussion will get us all a great deal further a great deal faster.

Lisa

Lisa,

Thank you for your post and for your concern about my health -- I feel great!! I hope you are well.

To address your statements regarding HCMA's recommendations for children -- I chose to have my child screened and the physician at the COE where I went is well known. He performed all the tests necessary to detect HCM -- I would love to share your post with him to see if he agrees. The costs for the examination were a simple co-pay for services -- not quite sure why some people do not carry insurance -- but that is their responsibility.

Insofar as your comments to me regarding Gordon -- if I cannot speak my thoughts, feeling or opinions -- then I gather you are looking for sanitized answers that agree with everything. Life is not perfect -- as you may well know!!

I wish you the best in maintaining your forums with the people you feel would be the best matches to showcase your main event!!

LISA EDITS HERE: Juli...what is your point here?

God Bless You
Regards,
Juli

[mtlieb]

Re: Teen Recovered after collapsing at basketball game!

A family history/questionnaire would be proven useless in our cases because neither one of us had symptoms. Questionnaires do not tell a story, echocardiograms do.

If this is the questionnaire we're talking about, it appears that about half of the questions pertain to family history and the other half pertain to the child in question and help to identify possible risk factors that may have been missed or glossed over by a family physician. It's true that in cases like yours it would not have told much of a story, however in many cases like mine, it would have proven invaluable. Had my parents been given this questionnaire as a prerequisite to my participating in school sports, it would have identified no less than five risk factors that our family doctor told us were 'nothing to worry about' and it would have prompted them to push for additional testing.

[mtlieb]

Re: Teen Recovered after collapsing at basketball game!

My question is this. What is being done to educate the first line of defense which is the beloved family doctor for warning signs on this condition?

I know that the HCMA has provided literature to many many doctors across the country and those of us who wish to become involved in the process can help facilitate the distribution of HCM-related materials to the front lines. Interestingly my former doctor had a poster from the HCMA on his wall and I was quite surprised (and delighted) to see it there when I walked into his office for the first time. This was my family doctor not a cardiologist, so obviously the information got to him somehow.

[tom531966]

Re: Teen Recovered after collapsing at basketball game!

somehow is the key. Nobody seems willing to tell the how. I too would be glad to help distribute........but the how is a mystery.

[Cynaburst]

Re: Teen Recovered after collapsing at basketball game!

No mystery here. The HCMA has a program called "Get the Word Out" where a person can fund the mail distribution of HCM literature to the doctors in their area. We bring information to medical meetings and distribute to doctors at the meetings. We give presentations at other medical meetings. Our only limitations are having the resources to disseminate the information. If we had unlimited funds, we could show up at every medical meeting in the U.S. and educate the physicians. Unfortunately, we have a limited budget and a limited staff, so we have to allocate our resources accordingly.

It is all a process and we would love to have more people involved. Call the office and see what you can do to help us get the word out farther.

[tom531966]

Re: Teen Recovered after collapsing at basketball game!

It was a mystery. It took 7 posts by 3 moderators and the founder to answer a simple question. Which Cyn to your credit you answered with the "Get the word out" Why was that so hard to answer? How many people read this and could have been informed several posts ago about the "Get the word out" program that might not see it now? Come on, you guys are supposed to be the experts here. Reading Lisa's bio which I am not sure why she chose to include it in the post as it is easily accessible anywhere here but did nothing to answer my question.
If we have this kind of confusion and lack on information from the top how are us simple folks supposed to know anything when we have to struggle to get answers? The answer is we will not. I know anytime anyone here has the nerve to question a moderator you all band together and come down on whoever does so. Or you simply close the discussion and use the "I am going to take my bat and ball and go home" defense. But if you continue with the approach of it is my way or the highway then you will alienate people from coming here.

[juli714]

Re: Teen Recovered after collapsing at basketball game!

I agree with Tom -- well said -- he cut to the chase -- he spoke the truth -- he got the word out. And yes, if anyone here has the audacity to question anything on this board -- there is a group of individuals here who gang up on that individual and/or close the thread down. That is not how you get the word out -- it does not inspire more research and education regarding HCM. Personally, I had never heard of HCM before I was diagnosed with it -- and neither did my mother or other family members. I went from cardiologist to cardiologist, doctor to doctor, heart test to heart test -- until I found that one cardiologist who was relentless with me and was well informed about it and who referred me to a COE specialist.

So, folks, the lesson to be learned is listen to people instead of shutting them out.

God Bless.

Juli

[gfox42]

Re: Teen Recovered after collapsing at basketball game!

Tom,
Sometimes it takes a while for people to communicate. In this case, it took rephrasing the question before it was clear to others (perhaps it was post #22 in this thread) what it was that you were asking. I realize that this can be frustrating, but I don't think it's particularly unusual.

Gordon