Posts Tagged ‘Heart Defects’


May 14, 2010

Jillian’s a true Cardiac Kid:

(I) Overhear her six year old cousin say “Yeah, well I have zippers too. Lots of zippers. I got a zipper on my jacket.”

Jillian’s response: “Yeah, well I got a zipper on my chest.”

“I ain’t got nothing to say…” – Bruce Springsteen, Dancing in the Dark

Heart Failure

December 30, 2009

“You’re in heart failure,” the doctor told me in the spring of 2002. Oh, boy… I wasn’t sure what heart failure was but I knew that the last time I had it, I was rushed to Johns Hopkins for surgery. That’s a comforting thought. And the doctor said it calmly, casually, as if he had just told me a fact that was common knowledge. Don’t take it so hard, doc.

I learned later that my first bout with heart failure was because I was five months old and I hadn’t had any surgical intervention yet. Once the surgery was done and I stabilized, my heart was functional enough to do its job. What I had this time was Congestive Heart Failure (CHF). Back then my heart was failing rapidly, really just coming apart at the seams. With CHF, my heart is failing again… just very, very slowly.

Imagine that you have a rubber ball. Day after day, you bounce your ball for hours on end. It’s nice and rubbery and no matter how many times you bounce it, it always bounces as high as the day you bought it. That’s how a normal heart works.

Now imagine you have a rubber ball, and you bounce it all the time. But this rubber ball has a flaw – maybe it isn’t formed well, or maybe the  rubber isn’t the highest quality, almost anything – but you begin to notice that your ball is losing its bounce. It takes more and more effort to make it bounce as high as it once did, and eventually no matter how hard you slam it into the floor, it just won’t bounce as high. That’s a heart going through Congestive Heart Failure.

If you google Congestive Heart Failure, you are going to get scared: A lot of the studies say that the average survival rate after a CHF diagnosis is five years. Obviously, you have to read deeper to find the truth. The studies that show a five-year survival rate usually take into account all diagnoses of heart failure during the study period – including the people who are already in the hospital with another illness and then receive the CHF diagnosis shortly before they pass. Since Heart Failure is fairly common in the late stages of life, they get counted in the study, even if that is not the main cause of their death.

Survival and quality of life with CHF relies heavily on the patient. You will be prescribed diuretics to keep fluid from building up in your body, and these will cause you to go to the restroom more often. You will also be put on a diet to help your heart beat easier, the standard CHF diet usually has two rules: consume less than 2000 milliliters of liquid and less than 2000 milligrams of sodium per day. That’s the standard diet, everyone is different.

The 2000 milliliters isn’t hard – that’s a two liter bottle of any liquid. (A friend of mind says that the 2000 milliliter part is harder, because she drank about a gallon of water a day before developing CHF.) Many people keep a two liter bottle in their home, and when they have a drink, they pour an equal amount into the bottle. This gives them a quick visual guide to how much that have consumed. Others just scribble the amount on a piece of paper (A 12 ounce can of soda is 355 milliliters, for example; almost all liquid products list the amount in ounces and milliliters) or do the math in their head.

The sodium restriction is much harder. For a few weeks, you’re going to have to read the nutritional labels on the food you buy closely, to check out the amount of sodium per serving. Processed meats are loaded with sodium, so if you are a fan of sub sandwiches… well, that might have to become an occasional treat, rather than lunch every day. And do yourself a favor and split it with a friend.

The best thing you can do is to stop using salt when you cook and allow everyone to season their own meal. And make sure that the salt shaker stays at the other end of the table. Mrs. Dash seasoning is popular when you are on a low sodium diet. Personally, I am not a fan of Mrs. Dash, so I use a Garlic and Herb salt free seasoning.

Every morning, a CHF patient should go to the restroom immediately after getting up, and then weigh themselves. Keep track of your weight, and if you gain more than 3 pounds in one 24 hour period that you can’t explain, call your doctor. The doctor will probably tell you to take a larger dose of diuretics that day, and if you are still up tomorrow morning, come by the office. After you get used to your diet and medications, you’ll know what to do and you won’t even call unless the weight just won’t come off.

The two most important factors in living a good life in spite of heart failure are a good initial examination and diligent self care. The people who are able to adhere to the diet, take their medications, and get some exercise do much better than those who don’t. Congestive Heart Failure requires a lifestyle change, you don’t get a vacation, and you can’t take a day off. Even if you are traveling and do not have easy access to a scale for your daily weight, that doesn’t mean that you can ignore all the other rules. In fact, maintaining your CHF control can be very difficult while away from home. But if you are determined to not let it beat you and to live your life to its fullest, Congestive Heart Failure can be controlled.

It’s all up to you.

2009 Bolder Boulder Photos (With Song Lyrics!)

May 29, 2009

Hold your mouse pointer over each photo!The ACHAmobile!

On the road again, just can’t wait to get on the road again; The life I love is making music with my friends, and I can’t wait to get on the road again!On the Road Again, Willie Nelson



Shy girl, afraid of the water; now you’re leaving them in your wake. So you fell down seven times but you got up eight!Look at You Now!, Mark O’Shea

The Funky Heart & Stephanie (HLHS)I’m just glad to be here, happy to be alive!End of the Line, The Traveling Wilburys

Get on your feet and get ready to great the 2009 ACHA Boulder Boulder Team!People you’ve got the power over what we do, you can sit around and wait, or you can bring us through. So come along, sing our song, you know that you can’t go wrong.The Load Out, Jackson Browne


Heather (Tricuspid Atresia) and Steve (Tricuspid Atresia)

Look at your life like a diamond, look at you shine from inside out!
Maybe you took some time to find it oh but look at you now!
– Look at You Now!, Mark O’Shea


George - CHD and Cancer Survivor!


Well it’s all right, even if you’re old and gray; yeah it’s all right, you’ve still got something to say. Well it’s all right, remember to live and let live; yeah it’s all right, you’ve still got plenty to give. – End of the Line, The Traveling Wilburys


Homeward Bound

Oh won’t you stay… just a little bit longer?Stay, Maurice Williams and the Zodiacs

No, a lifetime’s not too long…. to live as friends. Friends, Michael W. Smith

How Moms could help reduce Heart Defects!

May 15, 2009

There is new research from Canada that is showing a lot of potential:  Folic Acid, a form of Vitamin B9, could be a factor in lowering the occurrences of severe heart defects.

Earlier research links Folic Acid to lower occurrences of Spina Bifida and may lower the chances of premature birth, but new studies have shown another possible benefit of Folic Acid.  Researchers in the Province of Quebec studied the rate of serious heart defect births from 1989 to 1998, and again from 1998 to 2005. (In 1998, Quebec mandated that Folic Acid be added to grain products such as pasta and bread).

From 1989 to 1998, the number of children born with serious heart defects in Quebec averaged 1.64 per 1000 children born. While that seems to be lower than the United States figure I usually quote – 8 out of 1000 children are born with a heart defect – it’s different. The Canadian study is tracking serious heart defects, the US number is the total number of children born with a heart defect of any kind. Serious heart defects are usually defined as any of the defects that cause Cyanosis.

In the period before Folic Acid additives was mandated for grain products, the Canadians found an average of 1.64 children out of 1000 were born with a serious heart defect. After the introduction of Folic Acid, the rate of serious heart defects dropped – from 1.64 to 1.47 children out of 1000!

And while the link hasn’t been proven, there is a lot of evidence to show that it is there. The decrease in serious heart defects began to occur at about the same time as a higher level of Folic Acid was introduced into the diet. And the decrease occurred in spite of the fact that more women were overweight when they gave birth and they were having children later in life, both factors that usually increase the chances of heart defects.

While there is no guarantee that any medical condition can be avoided, it makes sense to do everything possible to tip the odds in your child’s favor.  So ask your personal physician his/her opinion about taking Folic Acid during your pregnancy.

Your friend,

Deja vu… all over again

October 14, 2008

You might have seen this video before.

I originally posted this video back in late August, when there were about 3 people (including me!) who read Adventures of a Funky Heart. Now that we’ve grown, I’m running it again.

Heart Moms and Heart Dads, YOU need to watch this very short video. I know that I tell you “This is important!” or “Click here and read this important link!” a lot of times, but this one probably tops them all. It will especially come in handy if you ever feel that you and your Cardiac Kid are all alone in the world, and you’re waiting on the other shoe to drop.

Did you see that? Over One Million adults with heart defects. And there are about 885,000 children living with a heart defect, too, and medicine is improving all the time. A child who has Congenital Heart Surgery today has a 90% chance of reaching adulthood.

The odds are very good that your Cardiac Kid is going to grow up and live a happy life. But this is your child, and I am sure you worry. I bet you already catch your breath when the phone rings and he/she is not around. I’m sure you already dread that middle of the night phone call… nothing good happens in the middle of the night. But with good cardiac care and good fortune, this doesn’t have to happen. That unexpected phone call will be your Cardiac Kid screaming SHE SAID YES! in your ear.

Until then, you owe it to yourselves to find a good group of CHD families and patients and get involved. I say a “good group” because groups can be toxic, just like people. When I went to college a local CHD group was recommended to me by my new Cardiologist, and I attended a meeting. Everyone who spoke had a tale of woe… it was almost as if they were saying “I’m sicker than she is!” I knew two things about my heart at that time –  I have a heart; and it doesn’t work so great – but I had just managed to graduate high school and was 200 miles from home attending college, for crying out loud. I didn’t want to hear “We’re Doomed!” repeated over and over. I never went back.

So find a GOOD CHD group: No whining allowed! (“Venting” is different from whining. Whining is a general “Woe is me!” attitude. Venting is more of a “This is unfair and it makes me angry! How can I change it?” mindset.)

What will a good CHD group do for you? Just watch:

So take a little friendly advice and get involved. Because there is someone out there who thinks they are in this all by themself. Show them they aren’t.