Posts Tagged ‘trust’

Don’t trust me

June 6, 2010

Google Alerts is pretty cool. I can set up a search for a phrase, and whenever Google Alerts finds that phrase on a new (to them) webpage it will send me a link to it. I have several Google Alerts, and one of them searches for the phrase “Congenital Heart Disease”.

I got a link from Google Alerts over the weekend that almost caused me to jump through the roof. I’m not going to give you a link – no need for this idiot to exist, much less get a link from me – but I will quote from his webpage:

Some of our friends/patients have congenital heart disease, meaning genetically they have high cholesterol despite avid exercise, diet, and supplements. However, for those of us who may not have a specific history of heart disease, yet want to prevent it , we should consider what is best for us to do – regardless of our family history. It’s not all about fat and salt, contrary to public opinion and the words of associations such as the American Heart Association.

SAY WHAT? I’ve been living with a heart defect for 43 years and writing this blog for two years. No one has ever said to me (and I have never found in any research) that Congenital Heart Disease causes high cholesterol. But wait, it gets even better!

However, speaking of salt, most people are sodium deficient. There is absolutely nothing wrong (and it actually should be encouraged) with adding salt during your cooking.

WHOA! Anyone been following the news lately? Salt isn’t your friend – especially if you have Congestive Heart Failure (CHF).

You could shake your head and say that the writer just doesn’t know the facts. But that’s not it. A little further down the page, our writer provides the answer to all your health concerns:

You’d be amazed at how a diet and lifestyle change can get you off cholesterol-lowering and high blood pressure medications. Adding natural nutriceuticals/supplements can add even more help.  If you have never received (our services), give us a call at (XXX) XXX XXXX. We would love to help you get on the road to eating healthy for life.

It seems that he isn’t just incorrect, he’s intentionally misleading you in order to sell his product. Here’s the truth of the matter: If you try to “cure” or control a Congenital Heart Defect with a diet plan or nutritional supplements alone, you will die. It can’t be done – heart defects require constant attention and lifelong care. Even those of us with a “simple” Atrial Septal Defect are recommended to get a periodic Cardiology exam.

So here’s what I want you to do – don’t trust me. Assume that I am just some idiot with a keyboard and an Internet connection. Obviously you have a computer; Google your CHD and look up the research for yourself. Learn how to read it (not so hard these days, you can just Google what you don’t understand) and learn, learn, learn! Talk to your doctor at length, pick his/her brain for all the information you can find. Ask questions. Take the answers and use them to think of even more questions to ask.

Remember that the person who is going to be most affected by your health is… you. The doctor is looking out for you, but at the same time, he has other patients to worry about. You probably aren’t in the forefront of their mind. So learn all you can about your health, and get involved in your own care. Take a hands-on approach.

It’s your body, learn how it works and how to take care of it!

The Stupid is strong in this one, Lord Vader!

March 6, 2009

Oh, boy.

According to Mark Twain, there are three kinds of lies: Lies, damned lies, and statistics. This one is a doozy.

There is a group in Australia that seeks “the truth”. The problem is, their truth usually involves a new conspiracy theory every day, and a government agent behind every tree. Yesterday they decided to give us “the truth” about medical myths, and mentioned the words “heart defect.” My Google Alert sent me an e-mail about it.

These guys are so off the wall that I’m not going to link to their website and give them the traffic. But here’s what they had to say:

It is absolutely amazing how frequently nutritional deficiencies are diagnosed as physical diseases or disorders. Let me give you an example. There’s a common heart disorder called mitral valve prolapse. This is the diagnosis you’re given when you have a heart valve that doesn’t maintain the correct shape. They’ll tell you it’s a congenital defect. They’ll say it’s something you were born with and, unless the valve is repaired through surgery, your heart will never beat correctly and you’ll have heart problems for the rest of your life. What they won’t tell you is that this is almost exclusively a nutritional problemIf you were to take nutritional supplements, or get nutrition through whole food concentrates, then your heart would begin to literally “shape up.” It would become more firm and the posture of your heart would rapidly improve, thereby eliminating the symptoms that were previously called “mitral valve prolapse.”

Complete and utter stupidity. What’s worse, it is malicious stupidity… the author isn’t just mistaken, he/she is bending reality to fit their own personal agenda. This group is way out there, I tell ya – they also believe that the US Government controls Facebook (to keep a better eye on you, citizen!) the United Nations has a plan to implant a computer chip in everyone’s head, and that Fluoride causes your IQ to drop. If the last one is true, then these guys brush their teeth much too often.

I know we had an earlier post about this subject, but the point needs to be slammed home: Do your own research, and only follow the advice of a doctor you trust. And even though you trust your doctor, back check him. Keep looking for information, use your knowledge, and follow your gut. Communicate effectively with your physician – a doctor’s medical knowledge, coupled with your understanding of your/your child’s heart defect, is an awesome weapon.  Use it.

And pay no attention to those yahoos who know “the truth”.

Don’t trust the Funky Heart!

February 20, 2009

You can read anything on the Internet. Anyone with a computer and a little knowledge can post whatever they want. In fact, I hear that “Funky Heart” guy is really a 31 year old Supermodel living in one of the suites of the Toronto Skydome. She’s looking for a new home, because they renamed Skydome “Rogers Centre” and her former husband is named Rogers, and she can’t stand the guy. I read it on the Internet, so it must be true!

One of the best resources on the internet is Google Alerts. Create an alert for anything you want – your name, for example – and Google Alerts will send you an e-mail anytime it detects what you are interested in. Now most of what I write about comes from my personal experience, but I have a group of Alerts set up for various terms related to Congenital Heart Defects. I may find something that you need to read, or an article could remind me to write a post that you might find interesting. They are very useful!

So I’m looking through my Google Alerts this morning and I’m pointed to an article that reads:

In regard to congenital heart disease treatment, most of the times the disease is easily rectified through use of surgical procedures; in some instances in fact there isn’t even any need to get congenital heart disease treatment performed. In any case, whether or not a person gets congenital heart disease treatment they can still hope to live a better, fuller and healthier life.

What the…? Ask anyone with a Heart Defect (or their parents) if the disease was “easily rectified” and see what they tell you. But it gets better:

Most surgical procedures can effectively fix congenital heart disease problems though even after the procedure has been completed there is always need for ongoing medical care because there is the lurking danger that the patient might soon develop disorders of their heart rhythm or develops endocarditis as a result of the surgery.

No, no, no… the Adult Congenital Heart Association (ACHA) exists to try to improve lifelong medical care for adults with a Heart Defect, but according to this writer, there’s no reason for the ACHA to exist. After all, most heart defects can be fixed, and all you have  to watch out for is events that would occur “soon” after surgery.There wasn’t a comment form on this webpage and no way to contact the author, so I couldn’t give him/her a piece of my mind.

I will state this as simply as I can: If you are a parent and you follow this advice, your child will die. It is that simple: A Congenital Heart Defect is a complex, difficult health issue that requires lifelong medical care. There are no simple answers and no quick fixes. Even the more easily corrected defects (such as an ASD) require monitoring.

So here’s what you need to do… Don’t trust me. Assume, if you want, that I am just an idiot with a keyboard and an Internet connection. Get the medical books. Learn everything you can about your (or your child’s) Heart Defect. Sit down with the doctors, and when he starts to slip into Medical Speak, ask him to explain it on your level. Go only to sources that you trust. Learn, learn, learn, and Keep Learning. Things change fast in Cardiology – someone born on the day of the first Blalock-Taussig Shunt isn’t old enough to retire yet. And until the 1980’s Hypoplastic Left Heart Syndrome (HLHS) was 100% fatal. Reagan was President when they had the first successes there… and that wasn’t that long ago.

And remember that what you read on the Internet ain’t always so!