Posts Tagged ‘Medical Advice’

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!

Racing the Clock

October 27, 2008

First for some news: Colby is out of Vanderbilt’s PCICU. There hasn’t been a new blog post on him since Friday; hopefully that just means he’s recovering and his parents have been spending time with him and catching up on their rest. There are some photos on his blog; the young man is quite handsome!

Meanwhile… the situation isn’t nearly as bright for Katie. She’s really having a difficult time; she’s scheduled for heart surgery Wednesday and her parents are facing some critical decisions. Go to her blog, offer your support, and keep this family in your thoughts.

Reading about Katie has caused me to scrap my idea for today’s post to discuss something extremely important: If you are the parent of a Cardiac Kid, you will have to make some extremely difficult decisions concerning your child. This is not something that might happen, it WILL happen – nearly all Congenital Heart Defects have to be dealt with soon after birth. Usually this will involve surgery, and quite often time is a factor.

“The clock starts… NOW!” the host says on all those game shows. You think solving the puzzle in 30 seconds to win a new car causes pressure? It doesn’t even come close. The clock is running and you’re trying to decide what to do to save your child’s life. This is where a couple are literally thrown into the fire… and come out on the other side with a strength they never knew they had.

Modern parents have the advantage of a sonogram. Congenital Heart Defects can be detected before the child is born and a plan can be formed. Obviously, the plan may have to be altered once the baby arrives and the doctors have a chance to examine him, but at least there is a road map to follow. If this happens, we plan to do that. If that happens, we’ll try Plan B. Older Heart Moms can tell you stories of the pre-sonogram days when the defect was discovered only after the child was born. From the happiest day of their lives to a life threatening crisis in a matter of moments, but somehow our parents got us (and themselves) through it.

Do not, if possible, make any life changing decision without discussing it with your partner. There are times when things go badly so fast that the other person is out of touch, and the remaining parent has to make the decision alone. Avoid this if possible – discuss options beforehand, and try to come to a basic agreement. Be completely honest with each other. It is a hard conversation to have, but it could keep a decision from being made that is contrary to a parent’s wishes. Someone always gets blamed, and marriages don’t survive that kind of pressure.

Once the decision is made, it’s done, and there is no second guessing. Never, ever, second guess yourself, because if you do it once, you’ll be doing it for the rest of your life. You can’t win the “But what if…?” game, so don’t even play it. Get all the information you can, as quickly as you can, talk it over with each other, and after that – it’s out of your hands. You’ve done the best that you can.

No matter what your core beliefs are, be sure to keep Katie and her parents in your thoughts.