Posts Tagged ‘Heart Defect’

On the cutting edge

November 5, 2010

Do you think my child needs one of those medical information bracelets? He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Yes, I would certainly get a Medical Information bracelet. I personally use MedicAlert, because you aren’t limited by whatever you can squeeze onto the bracelet. MedicAlert is a little more expensive – you have to pay for both the service and the jewelry – but you can have so much more information. I don’t just have a heart defect, I’m also in Heart Failure, you can’t read my pulse, my blood pressure, or give me an injection in my left arm because of my Blalock-Taussig shunt, and I take a small bucketful of medication every day. A “bracelet” that listed all that would be as long as my arm! (just try getting it through airport security!) With the MedicAlert bracelet, you discuss your detailed health information with a nurse over the phone and your bracelet comes with a telephone number and a numerical code. If something happens and you can’t speak, emergency personnel can call the number and enter the code, and they will have instant access to all of your information. Most of their bracelets are waterproof, so you can wear them in the shower – after all, it can’t do you much good if you have passed out in the bathroom and your bracelet is lying on your bedside table.

The Medical ID bracelet is important and could save your child’s life… but that isn’t the reason for today’s post. The second part of that statement made my hair stand up: He had Transposition of the Great Arteries but his doctor said he was fixed after his surgery.

Holy cow! Read this carefully, it is very important that it be understood: A heart defect can not be fixed. The word “fixed” implies that it is good as new. It isn’t. A heart can be repaired through surgery, which means that it can be made to function – perhaps not in the normal manner, but it is functional.

It is hard to believe that there are still doctors who tell Heart Parents that their kids are “good as new!” They used to tell them that, back when I was growing up – because they didn’t know any better. There weren’t that many Cardiac Kids around, so no one really had any idea what the future held for these children. But this child had been born with a critical health problem, had survived a delicate surgery, and would get better. He or she might not have as long or as full a life as the other kids, but we had won this battle. Now go, get out there and enjoy your life! And for years that was the common practice, because kids with heart problems didn’t live as long as other children. As an example, Cardiologists at Johns Hopkins Hospital told my parents that if I needed a second operation, it would probably have to happen ten years in the future. My parents asked what kind of surgery I would need, and after a long, uncomfortable pause the doctors admitted that they didn’t know. “That operation probably hasn’t been invented yet.”

But then something totally unexpected happened: Cardiac Kids grew up! As we grew, we had more heart problems – some of them related to our original defect, and some of them new. Doctors had new tools they could use to help us out, either a new drug or a better surgery. They could do a lot more with Catheterizations, too. And while we were proving that we could grow up, doctors were discovering that those heart problems were still popping up, sometimes years after we had been “fixed.” And their thinking started to change.

Today, most Cardiologists will tell you that your child’s heart has been repaired – and he or she will always need specialized cardiac care. Their heart is misshapen, blood vessels run the wrong way, it has holes where there shouldn’t be any, and has been altered by surgery. Even after they grow up, Heart Children will always have to make allowances, take medication, go see their Cardiologist, and stay on top of their health. And they will have to do this forever – because even though their heart is functional, it isn’t normal. No it isn’t fair, but this is the way it is.

And if your Cardiologist is telling you your child is “fixed”, you seriously need to consider finding another Cardiologist. Because this one is living in the past.

And Cardiac Kids live their lives right on the cutting edge of medical science. We always have, and we always will.

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Casual Fan

October 15, 2010

Certainly you’ve heard the big news – the University of South Carolina beat the number 1 football team in the nation,  the University of Alabama. Boy, it was something to see! I would have loved to have been there, but I am a “casual fan”.

Now I consider myself a pretty loyal Gamecock supporter, but 1) I am not a Student; 2) I don’t give a ton of money to the Gamecock Club; so the athletics department considers me a Casual Fan. And like most venues, the Casual Fan doesn’t qualify for Premium Seating Options (a fancy way of saying “Good seats”).  Sit in the student section? Nope! Take the elevator to the skyboxes or sit close to the field? Surely you jest. Casual fans get the leftovers. But there are 80,000 seats in Williams Brice Stadium – lots of leftovers! And even with my heart defect I am mobile, so I don’t sit in the Handicapped section. Someone else may need that space.

You still have to think ahead, because with 80,000 people trying to get to the same place, not everyone can park close. Usually the closer you can park, the more money you contributed. So a guy like me might as well plan to leave early, because I can’t get there five minutes before game time. Sprinting to my seat just doesn’t work for me – especially if I have a seat in the  upper deck. The advantage to getting there early, of course, is that you get to take your time, look around, and if you are lucky, bump into a friend who invites you over to a tailgate party!

But then you have to hike the steps to your seat – and not at your own pace anymore. Steps and I do not get along well, I need to take it slow and easy and rest occasionally. That’s really hard to do with a group of fans behind you, all anxious to get to their seats. (Yeah, I’m the slowpoke that’s holding up progress!) And if my seat is high enough, I ain’t coming down until the game is over. No concession stand trip, because the fan who walks down must walk back up. Once is enough for me!

I’ve sat in some high seats at times. A friend and I went to an Atlanta Braves baseball game in the early 1990’s. That was before my stroke and I could handle steps better back then, and we had very high seats. The game announcer told us that Steve Avery was the Braves’ pitcher that night, but we weren’t sure – this little guy about half an inch tall walked out to the mound! He was a very good pitcher, but we couldn’t tell you if it was actually Steve Avery or not.

I had two sets of tickets to an opening round baseball game at the 1996 Olympics – one pair was low on the field, the others were very high. I kept the low seats and gave the higher seats to a friend and her boyfriend. Since we never saw each other at the game, I called her later and asked if they had made it.

“We were there! It was great, thank you again!”

Where were you two sitting? I asked.

“We were in the very top row! I think we were two rows above Jesus!” (Which team was He pulling for? I thought, but didn’t ask.)

Weather can also be a factor. It can get cold in South Carolina – and I’m cold natured. When I get cold, I can’t feel my fingers and toes. Then I can feel them again – they hurt! And until I get warm, I can’t move them without pain. My dad and I were able to go the 1981 South Carolina – Clemson game, when Clemson finished with 12 wins and no losses. The game was miserable (Clemson ran us off the field) and the weather was miserable  – highs in the 40’s with a stiff breeze blowing.  Not pleasant at all! Still haven’t figured out what I was doing there.

So when you add the walking distance, the steps, the weather, and my heart defect, I usually just don’t go to ball games. But I still have the best seat in the house…

…right in front of the TV!

The Ol’ Man

July 12, 2010

When I head to Houston, I’m going to be carrying all new gear!

Sorry, no Greater Regional Memorial Hospital has decided to sponsor the Funky Heart. (Well, no hospital or other organization has offered yet… maybe someday!) The reason is a little more mundane than that:  I’m getting older, and my carry-on is getting heavier.

As far as I know, I am the second oldest living person with Tricuspid Atresia. My Cardiologist told me that I was his oldest TA patient a couple of years ago, then I met a group of other Tricuspids at the Adult Congenital Heart Association’s national convention in Philadelphia. Most of those people were in their 30’s – except for Pam, who is *AHEM* years older than me. (I’m not stupid, I know you don’t reveal a woman’s age without her permission!) So at 43 years old, I think I’m the second oldest person there is with this “fatal” disease.

But my laptop seems to be getting heavier and heavier with every step. It’s a good machine, it just has a few years on it and it weighs in at about five to six pounds. And my computer case is just that, a case, and there isn’t much room for my pills. My ticket and flight schedule – all the paperwork associated with a trip – fit in a folder that slides into the case easily, but my pill containers barely fit, especilly if it is a longer trip. And the Eleventh Commandment states, Thou shalt not pack thy medicine in thy checked luggage; lest thy bag go to Detroit while thy go to Denver. So I wouldn’t mind a new laptop case, either.

The carrying case came first; I got a Swissgear ScanSmart bag. Instead of a case, the ScanSmart is a backpack – it’s bigger and deeper and has more storage space. And it is light, too! I would highly recommend this bag – you don’t even have to take the laptop out of the ScanSmart when you go through airport security. The Transportation Security Authority (TSA) says that you don’t have to remove your laptop IF the laptop is isolated so that the x-ray unit can “see” above and below the laptop. Open a zipper on the ScanSmart and it lies flat like a clamshell; one side contains all your gear and the other side contains  the computer – and nothing else. No problem at all for the TSA. (Of course, they do reserve the right to search any package or bag. Hopefully mine will make it through without any questions!)

And next came the computer – I had to look a little bit before I found the one I wanted. I finally purchased a Toshiba Netbook that weighs two and a half pounds. It works great, but I don’t know all the little tricks and shortcuts that make it work better just yet. That has me a little worried – I hope to be blogging from the conference in Houston, not reading the instruction manual!

Of course, getting older is a good problem to have and something I am looking forward to. If events had occurred as some top doctors had predicted, I would be a 12 inch long grave in the cemetery behind my church, long forgotten by just about everyone.

I’m really looking forward to my impending “Ol’ Man!” status!

Another CHD T-shirt!

July 4, 2010

I recently found another great t-shirt with a hidden Congenital Heart Defect (CHD) message from Graphitti Designs. You may remember the t-shirt that I already own, Kryptonian at Heart (the shirt that received quite the reception at a gathering of CHD Survivors in Washington, DC). And now I find this shirt on their website:

Catwoman: Scratched

Yes, I bought it! Hopefully it will be here before my Houston trip at the end of the month.

If you want one, clicking the image will take you to the Graphitti Designs website. The website is a little disorganized, so the best way to find it is to just type Scratched into the search box.

But now I am wondering – are these two shirts just happy coincidences, or is someone at Graphitti Designs running a Congenital Heart Defect awareness campaign? I would like to think that someone over there is on our side!

Rebuilding a damaged heart

June 29, 2010

I’ve written about the Wake Forest Institute of Regenerative Medicine and the Bioprinter, both attempts to create organs in the lab. But instead of creating entire organs from scratch, doesn’t it also make sense (or sometimes make more sense) to just rebuild the damaged section?

CorMatrix has just received approval to market its bioscaffold material in the European Union. It’s been available over here since 2006, which makes it unusual. Medical devices almost always come into use in Europe before they are introduced over here.

Bioscaffold means “living framework” and that is just what the new material is. If you were to take a piece and have it analyzed, you’d learn that it is made mainly from pig intestines. But when you use it to patch an Atrial Septal Defect (ASD) for example, it changes. Oh it is still the pig innards, but instead of truly repairing the ASD, it just covers it. The material encourages cell growth, and before too long the patch will be completely covered by heart tissue.  As time passes the patch material will dissolve, leaving… nothing. No ASD, no patch, only cardiac cells. And since the cells are the patient’s own body, they’ll grow right along with the patient and never be rejected.

Personally, I’m looking forward to the day when scientists can build an entire heart in the lab! But it is a complex organ, and before they get that far they’ll do things like this – figure out what parts of the heart are working and rebuild the damaged sections. It just makes sense.

The Long Walk

June 16, 2010

“Improvise, adapt, and overcome.” – Heartbreak Ridge (1986)

Heart parents are understandably worried about their Cardiac Kid’s activity level. It’s a balancing act – we know that exercise and activity can help strengthen a weak heart, but how much is too much? And couldn’t something bad happen if he pushed him/herself too hard?

A 1997 research report concluded that parents worry about their children who have a Congenital Heart Defect (CHD). The study identified seven specific concerns but was unable to determine if these were specific to parents of CHD kids. The study was very limited – only eight parents participated – and drew no conclusions.

Sort of leaves you wondering. One of the major questions on my parents mind was my activity level, and what I could do physically. I think they were finally convinced by a Pediatrician who told them that he really had no idea what my limits were. “But I do know that when he gets tired, he’ll stop and rest,” he said. “I’ve seen thousands of children do that.” And…. he was right. No matter how much fun I was having, when I got tired, I’d quit and rest, and rejoin the game later. It all happened naturally, no one had to teach me how to do that.

One problem CHD kids can have is a lack of self-efficacy (in other words, we sometimes don’t believe we can accomplish a goal.) And honestly, sometimes we can’t – not in the normal, accepted way. This is where we have to convince ourselves that “there’s more than one way to skin a cat!” As a fellow Heart Warrior said in an interview published on this blog:

“…its about having the self-confidence to find another way when you reach a roadblock.”

And we all get a case of  “I don’t want to!” at one time or another. I know that walking is good for me, but I also know that walking in cold weather is going to cause my joints to hurt. I’ve got on thermals, coats, gloves, a scarf, and a heavy sweater; I’ve tried hand warmers and foot warmers (both thermal and electric) but it still happens – probably because of my cyanosis and/or my bloodthinners. My hands are going to ache; the joints of my fingers are going to hurt so much that they feel like dead weights until I get back inside and warm them. So in the winter months you can’t pry me out of the house and I wonder how the CHDers I know who live in cold areas survive.

This report outlines some exercise and physical activity guidelines for CHDers.  Even though those of us with a univentricular heart (a cool phrase for someone with one working ventricle, like my Tricuspid Atresia) have a reduced exercise tolerance, physical activity can help us, too. We just need to make sure that we don’t overdo it. And recent studies show that physical activity usually doesn’t trigger an ICD shock.

So the bottom line, Mom and Dad, is don’t become Helicopter parents and “hover” all the time. And for us CHDers, it’s probably OK to get out and exercise or play. Naturally, check with your doctor first.

And for me, to get up the enthusiasm to get out in the cold!




Five CHD Questions: Who?

May 9, 2010

Who gets a Congenital Heart Defect? (CHD)

The disease does not discriminate – in the United States, an average of one child out of every 125 live births has a heart defect. In certain locales the number is higher; there is a localized area, or a  “Cluster”, of Hypoplastic Left Heart Syndrome (HLHS) cases in the Baltimore, Maryland area; and in the state of Wisconsin the incidence of CHD averages a staggering 1 in 74  live births. (14 CHD Births per 1000 live births)

Of all the CHD survivors I have had the pleasure to meet, the vast majority of them have been Caucasian. A 2001 study shows that CHD mortality is an average of 19% higher among blacks than it is among whites. Statistical trends showed that the gap did not seem to be closing. A 2008 study surmises that the ability to receive adequate care may contribute to the difference in survival rates. Perhaps the answer is even simpler than that: money.

Being born with a Congenital Heart Defect means that you will need specialized medical care. This care will probably best be provided in a large, specialized hospital far from home, unless you are lucky enough to have a family that resides nearby. Surgery, hospitalization, room and board for the parents are all costs that must be factored in: When I was in the ICU at Johns Hopkins in 1967, the ICU services cost $60 per day. After my 2002 stroke, ICU costs at Emory University Hospital in Atlanta was $2200 per day. Understand that this charge was just for the ICU bed – the actual care (monitors, medications, specialized staff) costs more.

Which begs the question: How many have perished from a heart defect not because of the defect, but because their parents couldn’t afford to go any further than their community hospital?

If the answer to that question is  any number higher than zero, that’s too many.

Did you cause your child’s Heart Defect?

April 9, 2010

There has been some recent news coverage that contends that you just might have, if you were obese when you became pregnant.  But just in case you need to be reminded, News organizations make money by selling their product. There are lots of ways to do this, but two of them are really effective: 1) Make something so appealing that you just have to know more; and 2) Scare you so bad that you tune in/buy a copy to learn how to protect yourself.

How many Heart Moms look at their child in an ICU unit and ask themselves “What if…?” I’d wager that the answer to that question is all of them.

So you need to take health news on TV and in magazines with a grain of salt. A big grain of salt, really. The first thing I would recommend is that you drop by Gary Schwitzer’s Health News Review Blog. Gary has been in the Health Reporting field for 30 years, and he’ll tell you if the latest news report is wrong, and how it is wrong. This is a great resource to check out all those “We’re doomed!” news stories for yourself. Gary can teach you how to look at those news stories with a critical eye and not be scared to death.

Don’t take everything you read or hear at face value; if possible, try to find the original research. Read the information for yourself; then make an informed decision.

Did you cause your child’s Heart Defect? No one can tell you for sure. The new report that is stirring so much concern says that there is a better chance of having a child with a Heart Defect, but obviously it is not a certainty.

The heart begins as a straight tube, much like a drinking straw. As the heart develops it actually starts to beat in this configuration! Later, it will twist and fold over onto itself, forming a loop that will begin to grow together and form the organ that we are all familiar with.

All this happens before you even think that you might be pregnant. By the time you see the doctor to confirm it, the heart has formed. If you are destined to be a Heart Mom, it has already been decided.

Now this doesn’t mean that you can ignore all of your doctor’s advice! But think about it – millions of women have been like my mom – she did everything right, tried to follow their  doctor’s instructions to the letter, and still  I was born with a Heart Defect. Other women had every vice known to man, and their children were born healthy. So what causes Heart Defects?

I think that the main cause is a combination of genetics and environment. Research funded by the March of Dimes has found several genes that interact to help the heart form. Of special interest is the GATA4 gene – something it does helps the heart split into the left and right sides and form the Septum.  Figure out what is happening there, and maybe you can stop ASDs and VSDs!

The National Heart Lung and Blood Institute (NHLBI) has also determined that genetics play a part in the development of Hypoplastic Left Heart Syndrome (HLHS). A study of the family medical history of HLHS patients found that their ancestors also had a specific heart problem: a Bicuspid Aortic Valve. So apparently there is a genetic cause for HLHS – now the challenge is to find it.

Environment also contributes to heart defects. A section of Baltimore, Maryland contains a “cluster” where the incidence of HLHS is twice as high as the national average. What is going on there? What makes that area so different that it could trigger a Heart Defect?

Nationally, the incidence of Heart Defects is 1 out of every 125 newborns. But in the state of Wisconsin, the rate is 1 out of every 74 newborns. Wisconsin isn’t taking this lying down – they’ve created the Wisconsin Pediatric Cardiac Registry and are studying the data that it has generated, looking for clusters and what might be in the area that could create a Heart Defect hot spot.

What is the interaction between genetic factors and environment? What happens that triggers the formation of a heart defect? No one is certain, and the scary answer is that different factors contribute to different heart defects.  But if one day we could answer those questions, then maybe we could slam the door on Congenital Heart Defects.

Because every heart deserves to live a lifetime.

HOME!

February 24, 2010

It always seems to take longer to come back home than it does to go to Altanta. The situation was aggrivated by the weather today – cold and windy with rain (and a snowflake or two spotted while passing through Monroe, Georgia!)

My appointment went very well! My pump is pumping, my pacemaker is pacing, and all is right in my world. Once again, it looks like the best thing that could have happened to me was not getting the Fontan. Everything is funtioning quite well without it.

We’ll talk more later, right now I am road weary. So I’m calling it a night!

Pumps your blood!

January 1, 2010

Funky Heart! reader (and  longtime friend!) Laura reminded me of another way to learn the path of blood through the body: The Pump your Blood! song, from the TV show Happy Days!

Below is a clip from the TV show with Anson Williams singing the song. Here are the lyrics:

Pump, pump, pumps your blood!

The right atrium’s where the process begins, where the C02 blood enters the heart. Through the tricuspid valve, to the right ventricle, the pulmonary artery, and lungs.

Once inside the lungs, it dumps its carbon dioxide and picks up its oxygen supply. Then it’s back to the heart through the pulmonary vein, through the atrium and left ventricle.

Pump, pump, pumps your blood!

Pump, pump, pumps your blood!

The aortic valve is where the blood leaves the heart, then it’s channeled to the rest of the bod. The arteries, arterioles, and capillaries too bring the oxygenated blood to the cells. The tissues and the cells trade off waste and C02, which is carried through the venules and the veins. Through the larger vena cava to the atrium and lungs, and we’re back to where we started in the heart!

Pump, pump, pumps your blood!