Posts Tagged ‘Health’

A Weighty Matter

November 17, 2010

Some not so wonderful news to report: Children with Congenital Heart Disease (CHD) are more and more overweight.

That’s not good. While Cardiac Kids may be slow to add weight when they are young, most of us “catch up” later. We may be a little bit thin, but our weight is acceptable. But this study contends that once we catch up, we keep going! The reasons are many and varied, and usually just as applicable to Heart-Healthy kids: video games, fast food… you’ve heard all this before, I am sure.

But CHDers need to keep their weight under control. (…says the Funky Heart, who could stand to lose a few more pounds himself.) Every extra pound we carry means that our hearts have to work harder to pump blood through our body. That may not be a problem for the average kid, but our hearts are already bruised and beaten up; they have been cut apart and stitched back together again.  We need to make it as easy on them as possible.

So how much should you weigh? The research article cited above mentions the Body Mass Index (BMI) as one of its comparison tools.  The BMI is OK for use as a comparison, but don’t use it as your source for your proper weight. Ask your Cardiologist for advice about a good weight range to stay in. Many people contend that the formula used to calculate your BMI number is flawed. You have to wonder if they may not be on to something, since according to their BMI numbers, former President George W. Bush is a fatso and actor Tom Cruise (five foot, seven inches tall; 160 pounds) is plump.

So find out what your healthy weight range is, and do what you can to keep it there. Be sure to discuss any exercise plan with your doctor first – overdoing it and damaging your heart while you are trying to take care of yourself defeats the entire purpose, after all. Go outside and play; don’t think about exercising, just go have fun. Take a walk through the neighborhood, at your own pace. Get FitDeck Exercise Playing Cards. FitDeck Junior is great for Cardiac Kids, providing that their Cardiologist gives their approval. It’s all fun and games… but they are really exercising! (Shhhh! Don’t tell ’em the secret!)

I often remind my readers that CHDers are living longer and better lives as modern medicine develops new ways to overcome our Heart Defect. But it doesn’t “just happen”, we have to contribute to our own well-being.

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Ten Feet Tall… and Bulletproof!

November 15, 2010

“People always told me be careful of what you do…” – Billie Jean (1982) Michael Jackson

Here’s a post by blogger Doctor D about growing up as a Sick Kid. Here he is writing about children living with Diabetes, so what are parents of  Cardiac Kids who just hit the teenage years supposed to do? Give them room? Lock them in their rooms? Who knows? I can promise you one thing, life will not be “normal”… after all, what is “normal” to a teenager going through puberty?

Oh, goodness what a time. The hormones are fully in control and you just don’t want to hear a word your parents say. Whatever they want, you try to do the opposite, and you feel just like the title of this post: Ten Feet Tall and Bulletproof. Throw a Heart Defect into the equation and things could get crazy.  Sick Kid? Naw, that ain’t me! I’m just like my friends, I can go where I wanna go and do what I wanna do, and never feel “sick” at all! Medication? Who needs medication? If I miss a dose that’s OK, because I don’t feel any different.

There’s a problem brewing right there. A lot of times, you don’t feel any different when your heart is causing trouble. A worsening heart can steal your energy and your stamina, but not all at once. It does it so slowly that it is hardly noticeable… and then suddenly, you realize that you can’t do what you used to do and your energy level is way down. Here’s a newsflash for our teenage CHDers: You were born with this problem and you will have it every day you live. So you’ve got to pay attention to your health… every day you live. You are right, it isn’t fair. But rather than whine and cry about it and let your Heart Defect win, why not learn how to fight it?

The teenage years are just the time when they don’t want to follow your advice, so you got to get ’em when they are kids, not teens. When they are teens, you are THE PARENT and your opinion carries very little weight. When you and your teen have a conflict concerning their illness, it might pay to follow Doctor D’s advice and have a neutral party step in. So you gotta catch ’em when they are young.

And this leads to an incredible balancing act: exactly how much do you tell a CHD child about their heart? First things first, you don’t want to scare them, but you do want to help them know that taking care of themselves is so very important. Cardiology appointments and checkups and doing all the “little things” right will help them live longer and better. But you don’t want to drop that knowledge on them all at once, or when they are too young, because they will almost certainly start looking at the other side of the coin. It’s an uncanny ability that kids seem to have. And you certainly don’t want to hang the “I’m different!” thoughts on the child – we want him or her to fit in, to be a well-balanced kid who grows into a great member of society. If you approach every new situation with an “I can’t” attitude you’re going to miss out on some wonderful life events. And we don’t want that to happen, either.

It’s almost like a valve: you have to decide how much information they can handle and open up the information faucet just enough. Not too much, and not too little. In a few years when they are older and understand more, you can open the faucet just a little bit more. And hopefully, by the time they reach the rebellious years, they understand enough to know that their health is not the place to issue a challenge to parental authority. They can make you scream, run in circles, and even pull your hair out, but those medications are not to be missed and you see your doctor when you need to. Because you have taught them how important it is.

I do not envy Heart Parents with children on the brink of puberty. Those folks deserve a medal!

CHD and Childbirth

October 12, 2010

“…sometimes, important things get ignored or don’t get said.” – Judge Tolliver, The Jack Bull (1999)

Can a woman with a heart defect bear a child?

The answer is… perhaps. The question varies from woman to woman. Having a defect does increase the chances of having a child with a heart defect, and I am sure that is a “gift” that no parent wants to pass on. Perhaps the better question is should a woman with a Heart Defect attempt to get pregnant?

I can’t answer this question… you need to discuss this with your Cardiologist. Sometimes a defective heart can’t take the stress of nine months of pregnancy. Other times, with the help of a OBGYN trained in high risk pregnancies, the mother can have a child. And there are women who have a CHD who won’t need any extra precautions at all. As I have said before, every heart defect is a little different, and affects the owner differently. A friend of mine should not, under any circumstances, get pregnant… but she and her husband are exploring other options. She’s on her way to becoming a momma, just taking a different path. I’ve met Heart Moms who are really Heart Moms – they’re the one with the defective heart. I’ve met young women who are supremely frustrated because their Cardiologist keeps telling them it would be a bad idea, and I have met childless women who seem to be at peace with their situations.

Any CHDer, but especially a woman thinking of having a child, needs to think it through completely and discuss it with your doctor. Your Primary Care Doctor needs to be consulted, but you really need to consider the opinion of your Cardiologist.  A recent study conducted in Germany showed that nearly half of the women with a Heart Defect had not received any counsel about pregnancy or contraception. And nearly 20% were taking birth control that was contraindicated for them. (In other words, they had a health problem that was listed in the “Do not take this drug if you suffer from…” section.)

The bottom line is that all CHDers – male and female – are best served by looking after themselves. Our health challenges are so specialized that “sometimes the important things don’t get said.” It’s your health, your body, and you have to look out for yourself. The only exception is when you are young; then it’s your parents job to ask the questions. And teach you how to do the same when you grow up.

Off the page

October 10, 2010

Have you seen the newest Facebook craze? It’s a quick little game named “Find out how long you have left!” Answer a few simple questions and you get something like this:

John Doe has 42 years, 106 days, and 19 hours left. ENJOY!

*Snort* Yeah, right. There are way too many variables that have to be considered to make an accurate lifespan prediction. And what happens if you accidentally step in front of a moving bus?

John Doe has 0 years, 0 days, 0 hours, and 3 seconds left. ENJOY!

That could ruin your whole day!

My Atlanta Cardiologist was out-of-town during one of my appointments, so I was being seen by his partner. I don’t mind that a bit – she’s playing at the top of her game, too. It had been on my mind for a while, so I asked her THE QUESTION: Doc, how long do you think I’ll be around?

She rolled her eyes. “We’re pretty much off the page already! But as well as you are doing, if you keep taking care of yourself you should live a good long time.”

The key point, of course, is taking care of yourself. That can be applied to the heart healthy as well as the average CHDer. Keep your butt planted on the couch, you’ll wither away. Get up, get out, keep moving and doing things, you’ll last longer. There were two gentlemen in my community who retired about the same time. One came home, planted a garden, did some home improvement projects he had been meaning to get to, stayed active and lived for 15 years. The other one moved a comfy chair onto the porch, put his feet up on the porch rail and watched the world go by…. and was dead inside of two years. The moral of this story is obvious: If you want to live, tear down your porch rail and sell your chairs!

It’s not that hard to stay active. You really don’t even have to think about it. Take the steps instead of the elevator. Or you’re like me and you despise steps. What then? Simple… park at the far end of the parking lot. That little stroll will do you good, and it adds up, too. Have good friends – not the kind that have more drama than the local picture show. In a true friendship there are going to be hard times, of course, and you’ll be there for each other. But if your friend has so much drama in their life that they could export it to China…. you can do better. Keeping your nerves on edge is hard on your system.

Don’t take a shovel with you to the dinner table, you don’t need to eat that much. Eat good foods. I’m one to talk, I’ve been a junk food junkie all my life, but I am always working on it! Being put on a low sodium diet to prevent my heart from taking the day off is a hell of a convincer! A good rule of thumb is foods ending in with an OH! sound usually aren’t good for you. Doh-reet-OH!, Cheet-OH!… you don’t need those very often. About the only exception is the Cheer-e-OH!

Do the little things to take care of yourself. Fasten your seatbelt, and don’t drive like Mario Andretti. Even Mario keeps his speed under 200 Miles Per Hour when he’s on the public highways!

As I often say, Every heart deserves to live a lifetime. But you have to do your part, too.

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!

“At Night I’m a Junk Food Junkie…”

October 26, 2009

I have to go to the doctor’s office today to have my Prothrombin level checked, and I have a feeling that I’m going to be changing the amount of blood thinner I take. But overall, I think it is a good thing.

When you give the blood sample to have your anticoagulation level checked – a measure of the ability of your blood to clot – the results are your INR level. INR stands for International Normalized Ratio. At one time, there were many different systems and math formulas used to check anticoagulation, and lots of different results: This testing service may give you a result of 1.4, another might give a result of 73. It was too difficult to figure out if the systems were compatible, so finally the World Health Organization stepped in. A standardized system was determined along with a standard scoring system (the INR level). So now a reading of 2.6 means exactly the same thing, no matter if you have you test done in rural Virgina or downtown Toronto.

The rate at which your blood clots can depend on a lot of different factors: the availability of Vitamin K or Potassium are two of them. So when you start your anticoagulation therapy, they tell you to watch your intake of both and above all, be consistent.

I’ve been breaking that rule. Whoops!

All my life I have been a “Junk Fook Junkie”! That changed when I went on the low salt diet for Heart Failure, but I still ate poorly (Nutrition wise – it all tastes pretty good!) . I’ve recently decided that while I probably can’t just change completely, I can at least improve my diet.

So it’s been a bunch of little steps – and I’m a fan of the Eat This! Not That! series of books. They occasionally bump into my Low Sodium restrictions, and when that happens, the heart wins. Don’t take them as gospel, but rather as a guideline, and you’ll make better decisions. There are some Rules for Eating Well online at Everything Health that also make a lot of sense:

  • If you aren’t hungry enough to eat an apple, then you aren’t hungry!
  • Avoid snack food with the “OH!” sound (Doritos, Fritos, Cheetos…).
  • It’s easier to pay the grocer than the doctor.
  • Never eat something pretending to be something else (fake meat, fake butter, chocolate flavored drink…)
  • Make your own lunch whenever possible

But since I’m working on eating better, my diet is nowhere near consistent, and I have no clue how the Vitamin K and Potassium levels are doing. One thing you are told it “Try to eat about the same amount of green leafy vegetables that you usually do – big swings can mess up your INR.” Well I am not doing that, I am trying to increase the amount!

But they’ll just tell me to change the dosage of Warfarin that I take, and besides – you can’t really give a fellow a hard time for trying to take better care of himself, can you?

Get the notes!

August 4, 2009

My main task yesterday was to get my information together and fax the Medical Records department at Johns Hopkins. I don’t know what happened to them or where they went, but I have misplaced some of the photocopies of my records that I had gotten from them.

It was rather surprising that I actually got them. I emailed them and asked if records from February of 1967 were still available.  Surprisingly, they said they would look for them! And now I have managed to misplace them! Ain’t life grand?

You really ought to have a copy of your medical records handy, just in case. The more complex of an illness you have, the more useful they will be. I have multiple copies – an 8×10 folder (Which I take with me when I travel and leave somewhere in my room that it will be easily seen), a 3×5 folder in my back pocket, and a copy stored on a USB stick clipped to my belt. If I get taken into an Emergency Department unable to speak, I ‘ve got what I need.

And you have to look through everything and decide what’s important and what is not. I edit mercilessly – that unexplained fever I had in the 5th grade probably isn’t a concern any more, so that report stays at home. This is what I have in my heath folder: my vital statistics, insurance information, who to contact, allergies, information about my defect, corrective surgeries, diagram of my heart, and the last EKG I had. The basic stuff.

What you can also have that is invaluable is your surgical report. Whenever an operation is performed, a careful record is kept of the procedure. Here’s an example: Alfred Blalock’s surgical report of the first Blalock-Taussig shunt. (Page 1; Page 2) Having them is almost like letting that doctor travel back in time and see the original operation – he might have to call for a surgical consult to help him interpret them, but he’ll know exactly what was done during your operation.

Getting your surgical records might be difficult. The older you are, the better the chance they have been stored, filed and lost, and perhaps even disposed of. If you are the parent of a young child, be sure to ask for the surgical notes. The doctor may say, “Sure, no problem!”, or he may have to ask you to sign a form to show that they were transferred legally. You might have to jump through the hoops that the HIPPA law places in your way, but if they can be obtained, get them. Hopefully you’ll never need them, but if you do, they could save your life!

The Talk

April 17, 2009

Men, recall the dating adventures of your life. Specifically those few weeks when you were just getting to know her and she was learning about you, when things were still awkward and both of you were on pins and needles trying not to do The Wrong Thing. Because The Wrong Thing would be just the event to make the other person shout AHHHH! before running off into the night, never to be seen again. We’ve all been there.

When I was in high school and college I used to conceal my heart problem until what I felt was “the right moment”. It was hard to judge exactly when the right moment was – things had be be past the Just Talking stage, but not quite to the Dating stage. Usually when we were seeing movies and going out to dinner as “Just Friends.” Then I would tell her about my heart problems.

Why? Because I had fallen into the trap of thinking that since I wasn’t perfect, I wasn’t worthy. What could I offer anyone? And unfortunately there have been a couple of young ladies caught in that trap, also… as soon as we talked about my heart, the relationship ended.

This trap comes from the belief that anything less than perfection is a failure, and is unacceptable.  But the trap isn’t true… I do not know how or when it started, but somehow we have been convinced that the lesser citizens among us aren’t as important, or as useful. Their hopes and dreams don’t count.

For proof that this isn’t true, look no further than Susan Boyle. Susan recently appeared on Britain’s Got Talent, the show that spawned American Idol. Susan’s 47, slightly overweight, inarticulate, and not very attractive. The audience was laughing at her as she told the judges that she wanted to be a professional singer, and even the judges rolled their eyes and looked at her with dismay. Then the music started and Susan blew the walls down! (Click HERE to see Susan rock the house!)

Today, my heart comes up fairly quickly. As soon as the young lady asks what I do and I say I advocate for CHD Survivors, she’ll usually ask how I got involved with that. The answer is obvious.

If you are the parent of a Cardiac Kid, don’t let being unlucky in love get him or her down. You can’t walk away from life; you have to take it all, the ups and the downs. I often wonder how many turndowns were really because of my health, and how many I credited to my heart because my imagination was running away with me. Remind your Cardiac Kid that even though he/she may be physically weak, they’ve already been through a lot more than any of their classmates. They are strong in ways that most people can’t imagine, and they just have to keep being strong. You can’t win if you aren’t in the game.


The Unseen

February 18, 2009

Sitting in my Cardiologist’s waiting room today, I tried to guess how many of us were Adult Congenital Heart Defect patients. It’s not easy – four different offices use the same large waiting room. Cardiology, Gastroenterology/Hepatology,  and a third office share the same waiting room. The third office is tucked into the far corner, I’m not sure what specialty it is. Also, to reach the Pacemaker Clinic, you have to walk through the Cardiology department.

So who’s who? I know there is one Adult Congenital here – me. That guy looks like he’s in his 20’s, but he’s sitting closer to the Gastro office. How about that guy? No, he’s with his dad, who apparently doesn’t hear very well.

That’s the thing about us Heart Warriors – you don’t know when you are looking right at us. An observant person can pick up the signs pretty quick, or sometimes it’s just a snippet of an overheard conversation. For example, I never knew the woman sitting next to me was also a Heart Warrior until she said “So you’re a patient of Dr. Book…. ever heard of the ACHA?” And that day if Dr. Book had entered the office through the rear doors instead of through the waiting room, I’d have never joined the ACHA, the Adult Congenital Heart Association.

The ACHA’s core mission is to “improve the quality of life and extend the lives of congenital heart defect survivors.” It also provides us, through our online message board and our gatherings, the chance to sit down and talk with other survivors: The people who know what we have been through. Their stories may not read exactly as ours does, but they’ve walked the same road. Their experiences could be your guide through a difficult situation; just as you could help someone else out. But because our disability is hidden, sometimes we feel invisible. Or we feel so different it’s like we’re from another planet.

Are you an adult with a Congenital Heart Defect? If so, I invite you to join the ACHA. Membership is free, and the friendships are priceless. And there is always someone on your side.

Thoughts from 20,000 feet

February 11, 2009

While flying home tonight, I had time to reflect on Lobby Day 2009. My initial plan was to be “in the game”, lobbying myself and reporting via Twitter. My hernia prevented from happening – and that proved to be a good thing.

By blogging from the Capitol Hill Club, I could talk to our lobbying teams as they came in and completed their “visit sheets”. The details were still fresh in their minds, and I was able to give you an overview of our efforts.

Still, I didn’t speak to every team about every Congressional visit. So you did get an overview, but in a way it was like viewing The Last Supper in extreme closeup: You could see bits and pieces, but not the entire picture.

Seven different CHD support groups pooled their resources to make Lobby Day happen. Yes, we were all advocating for Congenital Heart Defect issues before, but each group had its niche and pressed its own issue. But when all all of the groups united to pull together, to press one issue… well, we may have just moved the U.S. Capitol an inch or two.

But the job is not over. At this moment, the Congenital Heart Futures Act is a good idea… and nothing else. It hasn’t even been “dropped” yet. (A “dropped” bill has been filed in the correct manner, given an identification number, and assigned to a Congressional Committee).

“If you build it, he will come” the voice in the cornfield said. We’re off to a good start with our building project. But don’t forget what was said later:

“If all these people are going to come, we got a lot of work to do.”