Information - the reason we're here

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

Today I was talking to my sister in law about HCM, most of you already know that my husband has HCM and not me, and we got on the subject of screenings. Her general practioner had told her that if her daughter, my niece, had a clear echo that she would always be clear - that HCM is present at birth and no need to re-screen. Boy, I was hard pressed to hold my temper! I explained how untrue that statement is and that it's clearly documented that most cases of HCM aren't diagnosed until adolescence or later.

I thought this GP knew more about HCM than that. Her own daughter's boyfriend died of HCM while jogging about 20 years ago and she has known my husband since he was a toddler. I've even had the HCMA mail her a physician's packet.

This is why the HCMA is here, to help disperse information about HCM. Even many competent medical personnel dont' know enough about HCM. Please, help spread the facts. Thanks for reading.



Reenie

[Cappy Atria Find all posts View Profile Close Cappy]

Re: Information - the reason we're here

One of my recent hospital stays, I seemed to know more about HCM, than the first year internal medicine resident.

I think there is a lot of information available here, but again, like any internet message board or site use the information carefully. This is not as meant as a shot on the HCMA.

Your participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein.

I like the site because there are people like me who can relate with how I am feeling, and dealing with living with the disease.

[Reinhard Junior Contributor Find all posts View Profile Close Reinhard]

Re: Information - the reason we're here

Cappy

Imformation is key and it's helped me a great deal when I visit the Doctors. Every time I go I'm a little more knowledgable. It certainly keeps them on their toes.


Reinhard

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

Re: Information - the reason we're here

Still, I do wish that someday I'll go into a doctor's office and actually get treated and get information I don't have. As it is now, I walk in, have them confirm what I know, and shell out some bucks for the priviledge of being right.

phooey (not to mention the number of times I could've died from ignorance. I'm not even going there right now.)

S

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

Re: Information - the reason we're here

Still, I do wish that someday I'll go into a doctor's office and actually get treated and get information I don't have. As it is now, I walk in, have them confirm what I know, and shell out some bucks for the priviledge of being right.

phooey.

One good thing is that I know enough to keep them from doing more harm than good (but this news is ten years too late for some of my systems).

S

[Cappy Atria Find all posts View Profile Close Cappy]

Re: Information - the reason we're here

Cappy

Imformation is key and it's helped me a great deal when I visit the Doctors. Every time I go I'm a little more knowledgable. It certainly keeps them on their toes.


Reinhard

I agree, this day and age that is very important. You have to be an advocate for yourself. I was actually encourage by my cardiologist to research things on my own. He knew that I was an excellent researcher and thought it might be good to find out as much I can. I actually was able to give him some good information and reference points.

[Bert Atria Find all posts View Profile Close Bert]

Re: Information - the reason we're here

The best self-defense for anyone is not only education on one's own medical questions and issues, but also on health care delivery system. It isn't an easy thing to do, but but it's safer than trusting the system. I'm sure that when a doctor is confronted with a serious medical problem that may require surgery or other issues for a family member, they put a great deal of effort into checking out the system. Herb Denenberg who's a member of the Institute of Medicine of the National Academy of Sciences, a board member of the Center fo Safe Medication Use, as well as the former Pennsylvania Insurance Commissioner, has stated that "When it comes to medical care, don't trust and do verify". He has also mentioned that; "Medical mistakes have reached epidemic proportions and that there is a national drive underway to do something about the fact that medical mistakes take more lives than motor vehicle accidents". He doesn't imply that that should avoid doctors, he simply means that; "You have to put the possibility (often high probability) of medical mistakes into your decision making process"

Just some thoughts.

[kthanki Junior Contributor Find all posts View Profile Close kthanki]

Re: Information - the reason we're here

I agree with Sarah. That is exactly what I have felt in last 6 months. I go the Dr.s and pay them to confirm what I already know. In fact, a cardiologist has asked me what I would like to do. He has asked me on dosage suggestions, when and how long to keep holter monitor.
I have stopped trusting the test results, I ask for actual EKG graphs and holter monitor strips.
I feel like the test results are kept vague in fear of legal actions. Echo techs are not allowed to give you their opinions...etc
I tell all medical professionals that I am not there to sue them, but please be honest and if you don't know tell me so..its OK.
It has come to a point where I can't even take my wife with me when I go to the cardiologist, she can't believe we have to pay them when all they do is ask me what to do.
Now I do have to say a place like Mayo is completely opposite. Everybody is a step ahead of you about HCM. I wish I lived in Rochester sometimes.
Sorry about the rambling....

[Cappy Atria Find all posts View Profile Close Cappy]

Re: Information - the reason we're here

My biggest beef right now is having so much different information to sort through. Sometimes I don't know whom to believe or what to do next.

I am so sick of seeing doctors and getting tested that I sometimes want to just say forget it. I am so burned out the whole stinking process.

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

Re: Information - the reason we're here

Dear Bert,

Yeah, preaching to the choir. Seriously, my parents trusted doctors and my father died from it and my mother is brain damaged and disabled because of it. So, no, I don't trust them as a rule.

But I agree about Mayo; they rocked my world and those people know of what they speak (I'm sure the other major centers are similar). I will never have any serious procedure done anywhere else, ever, if I can help it.

And my cardiologist has me doing my coumadin dosing myself, which is fine by me, but his nurse gives me grief when I see her. Whatever. (I have a home monitor.)

S

[Bert Atria Find all posts View Profile Close Bert]

Re: Information - the reason we're here

Cappy,

A characteristic of healthcare systems in the develop world is overtesting which in many instances is wasteful and can cause more harm. Today's physicians rely more on empirical tests rather than clinical acumen. Some of the main reasons are legal concerns, time constraints, screening needs, ingrained practice habits, and last but not least, financial gains (after all theyhave to generate revenue to pay for all of this high tech equipment they have).

Cappy, do yourself a favor... I personally wouldn't consult a doctor for trivial matters unless your symptoms are unbearable. The risks of a needless visit are greater than the risks of overlooking important and treatable disease by staying away. If you can't help it, I certainly would ask why the test is necessary. The more you know, the safer you're likely to be.

Just my opinion, that's all folks.

Bert

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

Re: Information - the reason we're here

I like this post and have about a millions things I would like to add... but right now I am so tired that I can hardly keep my eyes open... so I will revisit this in a few days.

Keep your thoughts coming....
Lisa

[Cappy Atria Find all posts View Profile Close Cappy]

Re: Information - the reason we're here

Bert,

Thanks for the info, that is good stuff to think about.

My problem right now is that I have seen so many doctors, and have had so many tests done in such a short amount (~ 5 months) that I really need time to absorb.

I would hope that my being bounced around and being picked, poked, and scanned, is not being driven by financial interests.