Posts Tagged ‘Endocarditis’

The Gerbode Defect

May 20, 2010

Here’s an echocardiogram of one of the most rare Congenital Heart Defects (CHDs) that exist. Look closely or you won’t see what is known as The Gerbode Defect.

The Gerbode Defect isn’t an Atrial Septal Defect, though it acts like one. It isn’t a Ventricular Septal Defect either, but it acts like one of those, too. The Gerbode Defect is a connection between the Right Atrium and the Left Ventricle. (CLICK HERE for a simple diagram.)

And again, that’s not really the problem. The defect lies in the Tricuspid Valve – there is either a small “gap” in the base of the leaflet closest to the Septum or there is a small hole in the septum just at the base of the Valve. (Here’s a diagram of the Tricuspid Valve showing the possible location of the defect.)

The Gerbode Defect is hard to find, hard to diagnose, and easy to miss. The defect is so rare that researchers at Children’s Memorial Hospital in Chicago report that they observed six cases of Gerbode Defect over a nineteen year period. And while most of the time it is a Congenital Defect – you are born with it – Gerbode can also be an acquired defect.

Wha…? How is that possible? Endocarditis can cause the valve or valve wall to deteriorate. Here’s yet another reason to avoid Endocarditis if you are a CHD Survivor!

AVOID this Vegetable Garden!

November 3, 2009

I’ve written before how CHDers need to avoid Endocarditis if at all possible. Endocarditis is caused by a bacterial infection in the bloodstream, and it happens a lot more often than you think it does. If you are healthy, your immune systems can usually smother the infection pretty quickly and you may not even feel bad. But if you have a heart problem, sometimes that bacteria can get a foothold and start growing, and then all kinds of problems can develop. I’ve spent seven weeks in the hospital with Endocarditis and had to have a cyst taken out of my brain because of it. Not fun!

The easiest ways to prevent Endocarditis is to be prescribed oral antibiotics before a dental appointment (if you need them; not every CHDer does. Check with your Cardiologist) and if you get a small cut or injury, STOP and take care of it right then. Would you rather spend ten minutes cleaning up a wound and then covering it with a Band-Aid when you injure yourself or two months in the hospital after it becomes infected?

From the EchoJournal website, here is a look at some of the damage that can happen from Endocarditis: This person had the bacteria lodge inside of  his/her Pulmonary Valve and begin to grow. Now it is a vegetative growth inside the valve, but trust me, this is a vegetable garden that you want absolutely nothing to do with! On top of the weeks of IV antibiotics, this person will need heart surgery to replace that damaged valve.

Why the guidelines were changed

September 25, 2009

The American Heart Association has long had guidelines for dealing with Endocarditis – a problem not faced by the majority of people, but threatening to those of us with Congenital Heart Defects (CHDs). Endocarditis can occur when bacteria in the blood settles on a damaged heart valve. This can cause an infection of the Endocardium (the inner lining of the heart) or can damage or destroy a heart valve.

For years the guidelines stated that if you had any kind of problem with your heart (defect, bypass surgery, had a valve replaced, etc.) you should take antibiotics to protect yourself from Endocarditis when you went to the dentist. But the guidelines have recently changed: Now, antibiotics are only recommended for certain people, and for certain procedures.

The guidelines have been changed because researchers have found that Endocarditis itself is changing. Studies in Europe have shown that the Antibiotics may not be that much of a preventative, and health care Endocarditis – Endocarditis caused by “in hospital contamination” – is rising. Also, surgery (if needed) is seen as being more effective the earlier it is done, so you need a whole team approach – Cardiologists, Cardiac Surgeons, Infective Disease Specialists, and a major cardiac surgical center, all working together.

One of the ways Endocarditis is diagnosed, especially if you have a medical device implanted in your body, is by Trans-Esophageal Echocardiography (TEE). It’s usually not pleasant: A tube with an ultrasound probe on the end is passed down your throat to give the doctors a good look at the heart from as close as possible. Ouch!

Mayo Clinic is working with new computer software to diagnose Endocarditis without the TEE. Designed to work like the human brain, the software literally has to be “taught” what to look for and how to respond. It’s complicated, but the software has made the correct diagnosis most of the time. (72 out of 73 times for all infections; and 12 of 13 Endocarditis cases in particular.)

Close encounters of the dental kind

July 31, 2009

It has been a busy week! Things don’t stop when you go out of town… I’m just now getting really caught up from my trip to Durham! I haven’t even unpacked my laptop bag; I need to get everything out and start charging batteries!

But Monday afternoon I had to stop for a while and go see my dentist, to write the final chapter of The Tooth Chronicles*. As usual, I took my antibiotics: The American Heart Association recommends that people with certain Congenital Heart Defects (press release with basic information) take antibiotics an hour before the dental appointment.  (Here’s the full report)

We do this in an effort to avoid Endocarditis. Endocarditis is an inflammation of the lining of the heart, and it usually attacks the heart valves. And since I have had it, I am a firm believer in taking my pills! Endocarditis put me in the hospital for seven weeks, getting IV antibiotics every minute of it. Well, except for a couple of hours…

I was slurring my speech, forgetting things that just happened, and dragging a foot when I walked – and I didn’t realize it. My parents became alarmed, naturally, and mentioned it to the doctor, who looked me over and decided that I needed to have the Neurologist drop by. The Neurologist decided pretty quickly that I needed an MRI.

So I was bundled up, shipped to a different hospital – this was the late 1980′s, there wasn’t an MRI machine on every corner back then – and they ran a scan of my head. Sure enough, there it was: a silver dollar sized cyst inside my brain.

My next stop was the Operating Room. Thankfully it was not very deep and pretty straightforward – the operation started about 3:00 PM and the surgeon made it home in time for dinner. I did come out of the OR looking like Kojak, though.

After that, there was two more weeks of IV antibiotics before I was able to go home. And as often happens with Endocarditis, there was really no way for sure to tell how I had gotten the bacteria. But it can occur when a CHD survivor has dental work, so I am careful to “dose up” before I see the dentist. And it was only later that I found out that Endocarditis can lead to heart valve damage – enough to need surgery to replace the valve – and can even kill you! So if you have to see the dentist, call your cardiologist first, and get a prescription for antibiotics if you need them.

* I have an overbite; over time, my lower teeth have worn down the back of that tooth and finally exposed the root. I got the root canal and went back to my local dentist for the follow-up. He felt that it would be better to bond it rather than insert a crown.

More on the Tooth

June 29, 2009

My dentist normally takes Fridays off, so I had to wait until this morning to see him. Thankfully my local Primary Care Physician (PCP) was prescribed some pain medication, so I had a peaceful weekend. My Cardiologists in Atlanta also prescribed the antibiotics for my dental visit. (It is VERY IMPORTANT for certain CHD patients to take antibiotics before a dental appointment; click HERE to read the American Heart Association’s guidelines. Antibiotics before dental appointments can help you avoid Endocarditis!)

My dentist thinks that the tooth can be saved via Root Canal… Sort of scary to a Funky Heart with a fear of dentists and their power tools, but it has to be done. I have an appointment with a dentist who is a “root canal specialist” Thursday morning. It’s listed as a “consultation”, but I am hopeful that this dentist will just say something like “We may as well get started….” because I am ready for this problem to go away!

Bet ya didn’t know…!

March 11, 2009

UGH!

I’m late, I know I’m late… the hernia has been in a bad mood. I’ve spent plenty of time stretched out on the couch with a heating pad today. But the hernia is not going to win. I am going to win, and Mr. Hernia needs to realize this and just start playing nice!

We’ve got a lot of new links that have been building up, so there is plenty for you to read tonight. First of all, here’s a cool 3-D model of the heart used to prep for surgery.  It’s a computer model of the patient’s actual heart… study it, turn it, look at from every angle, and there is less chance of nasty surprises happening during the actual surgery!

Think fast! Five Congenital Heart Defects present Cyanosis early in life, and all start with the letter T. Can you name them? The answers are below.

By studying Chicken Hearts we can learn something about human hearts!

Here’s another surgery simulator! This one is tough, if you mess up here, call your lawyer!

China hasn’t been taking care of it’s environment, and it is coming back to haunt them. Chinese families are getting crushed, too.

Here’s a long post on Infective Endocarditis (split into three parts! Make sure to note the last paragraph in the third box!) Endocarditis is something you don’t want to mess with, but you’re more susceptible to it if you have a heart defect.

Barney Fife used to say that “We have to nip it in the bud, Andy!” He’d love this: Heart surgery done BEFORE the child is born!

Answer to the question above: The five blue T’s are: Tetralogy (of Fallot); Transposition (of the Great Arteries); Truncus Arteriosus; Total Anomalous Pulmonary Venous Return; and Tricuspid Atresia!

Cyst la vie! (That’s life!)

December 10, 2008

Yes, the misspelling is intentional – read this post to learn why!

There are THREE new Cardiac Kids in the blogroll -LukeNathan and Casey! I’ve also put a link to my interview of Adult Congenital Heart Association (ACHA) President Amy Verstappen in the blogroll – I posted it on October 1st, so it has been off the front page for quite a while now. But it is the most popular post I’ve ever written by far, and probably the most important – for both Heart Warriors (Adults with CHD) and Cardiac Kids. It seems someone clicks on it every single day, so I’ve linked it to the front page to make it easy to find. Also, be sure to check out the blogroll links marked RESEARCH for the latest in CHD news and clinical trials!

It was a Sunday morning. I had been in the hospital almost all summer with Endocarditis, which is not a fun way to spend the summer! Nobody knew then – and we still don’t know – how I got Endocarditis. One of the most common ways for a heart patient to get it is through dental work without taking the prescribed antibiotics, but that didn’t apply to me since I hadn’t had any dental work done recently. No matter how I got it, the cure was six weeks of IV drip antibiotics. *sigh* So there I was, in the hospital with a needle in my arm, for SIX WEEKS.

Thankfully, I was stupid. I had no idea that Endocarditis can do strange, unusual, and occasionally fatal things to your body! If the Endocardits attacks and damages one of your heart valves (one of their favorite places to lurk) you could need surgery to get it replaced. It can – I learned later, thankfully – kill you. And a certain percentage of patients may develop a cyst in their brain.

Guess who got the cyst.

The treatment for that is surgical removal of the cyst, followed by six more weeks of IV antibiotics. I was not pleased at all, but what choice did I have? The brain operation was “simple” as far as brain operations go. Usually you hear of people having brain surgery being kept awake, but that wasn’t so in my case. They just knocked me out, took out the cyst, and sewed me up. The surgeon started at 3 PM and was home for dinner.

Six weeks does not fly by while you are in a hospital, that’s for sure. But I was out, back home, my hair was growing back, and all was well in the world. It was a Sunday morning and I had just stepped out of the shower, and was leaning against my dresser as I put on my underwear.

And I woke up in an ambulance?

The doctors determined that I had a seizure – brought on by the removal of that cyst. It’s a possible side effect; the scar tissue in my brain basically causes me to “turn off” at times. I don’t show the symptoms of a typical Grand Mal seizure, I usually just pass out. The doctors set me up with a prescription of Dialantin to control the seizures.

Dilantin requires you to take a pretty sizable “loading dose” to get things started, and after that, the doctors have to fine tune it to your system. You obviously need enough to help you, but not so much that the side effects start kicking in. They warn you to stay alert, this could happen again.

It did. I happened to be squatting down looking into an open storm drain at the time… and instead of falling forward (which the laws of physics and gravity should have caused) I fell backwards. I like to think my Guardian Angel gave me a little shove!

But ever since I got my Dilantin regulated, I haven’t had a seizure… it’s been 10 years plus! In fact, a Neurologist said that if I wanted to, I could quit taking the Dilantin and “see what happened.” Ummm… no, thanks. I’m not big on taking medication unless I have to, but I’ve seem what might happen. So I’ll stick with my Dilantin.

Tell you what, doc: You pass out and ricochet off a dresser and a chair as you fall, and get back to me on that idea!

Endo’s Gotta Go!

August 26, 2008

Rinse with water.

Floss.

Rinse with a pre-brush mouthwash.

Brush my teeth.

Rinse with water.

Use mouthwash.

And I even have a gadget that sanitizes my toothbrush with UV light. Am I a little bit paranoid? Well, yeah… but I’ve fought endocarditis. And that is no fun.

Endocarditis is when the inner lining of your heart becomes inflamed, usually the heart valves. It can be either infective Endocarditis or non infective Endocarditis, depending on if a microorganism is causing the problem or not. And one of the more common ways to get it is when bacteria enters the body through a mouth wound, usually through a recent dental procedure.

I hadn’t had any dental work recently, but I was still feeling run down and out of sorts. So we skipped the local hospital and went straight over to Providence Hospital in Columbia. My temperature was up, and they knew I had something, but wasn’t sure exactly what. So they admitted me and gave me a general menu of antibiotics to try to bring the fever down.

It didn’t work – in fact, a few days later my temperature hit 103. And that is when one of the doctors mentioned the phrase “Cooling Blanket.” Trust me, you don’t want to be issued a Cooling Blanket.

The Cooling Blanket goes right above the sheet on your bed, and it has several long, thin tubes running through it. Saltwater is pumped through the tubes to cool the blanket, and the patient below it. They use saltwater because you can cool saltwater to below 32 degrees before it freezes.

The Cooling Blanket was as cold as it could go, and to make it even better (or worse), the doc turned my air conditioner on full blast and shut the door. Columbia was in the middle of one of the warmest summers in recent memory, but it felt like a Chicago Christmas in my room. The only thing missing was the wind coming off the lake.

Finally the blood cultures came back – the first culture had accidentally been contaminated, they had to do it again – and they determined that I did have Endocarditis after all. The cure for that is four weeks of antibiotics. Endocarditis is like a bad penny, it just won’t go away.

Oh, boy.

About the third week of this I was having trouble. My brother noticed it first; when I walked, I was sliding one foot rather than lifting it. I didn’t even realize it. After my short term memory get bad and I started slurring my words, they moved me over to another hospital, where they had an MRI scanner.

My scan was at 1:00 PM, and by 3:00 PM I had been admitted to the second hospital and being prepared for surgery. Surgery?!?! Somebody’s got some ‘splaining to do! Turns out a small percentage of Endocarditis patients can develop a cyst in their brain as a result of the infection, and I was holding the lucky ticket.

The cyst was the size of a Kennedy Half Dollar, but it came out easily. All we need to do now is have some more antibiotics…three more weeks worth.

Oh, boy (part 2). But what are you going to do? I was to the point of chanting “Endo’s gotta go!” and this was the only way to get rid of it. So I gritted my teeth and put up with it. Needless to say, they had shaved my head for the operation, so I spent the next few weeks looking like Lex Luthor. And only after I made it back home did I learn that certain forms of Endocarditis has a 20% death rate!

So take my advice, ACHDer’s and Cardiac Kids: Take care of your teeth, and ask your dentist to prescribe any needed antibiotics before dental appointments!

Watch out for the Cow!

August 14, 2008

When you have a Congenital Heart Defect, nearly every medical event in your life is affected by it. Even having your wisdom teeth pulled.

Before I go to see the dentist, he has to prescribe antibiotics to help prevent Endocarditis. Usually the drug is Amoxicillin, since I am not allergic to Penicillin. An hour before my appointment I am to take SIX large capsules of the drug, and follow it with two capsule taken six hours afterward. I take my drugs exactly on time, because I have dealt with Endocarditis before. To say that it is not fun is like saying that a nuclear explosion could cause a slight disturbance.

So I pop my pills and go see my local dentist. The cleaning goes well, then in comes the dentist. He is masked and gloved up with a face shield. I remember the pre-AIDS days, when he would just come in, wash and dry his hands, plop down on the stool and get to work. That will probably never happen again.

Everything is going well when he suddenly says “Hmm….” I hate it when they say that that. “Hmm….” is doctor code for “Ut-oh.”

“Problem?”

“Looks like you need to have these wisdom teeth removed.”

Oh, great. I hate going to the dentist. Don’t get me wrong, I have nothing against him personally, as far as I know he is a nice guy who loves his wife and coaches Little League. But his occupation has never impressed me and now he wants to start chopping.

“Ok, doc, can we do it today?” Let’s get this over with.

“Not on your life. I’m sending you to an Oral Surgeon.”

My dentist has always be very cautious about working on me, which I appreciate. But if I have to have this done, I want to get it done ASAP. So after a week of waiting and jaw pain (which very well might be imagined) I’m off to see the Oral Surgeon.

“Your local dentist has forwarded your records and we have spoken on the phone,” he says. “Because of your heart, we’ll do the procedure at the hospital and I’ll admit you overnight.”

Well, I’m not a fan of the hospital either, but if it has to be done, so be it. “How about anesthetic?” I ask. “You’ve got to be careful because I have low blood oxygen.”

“I don’t plan to knock you out,” he says, “but we’ll give you enough to keep the pain away. You’ll probably doze off.”

The wisdom tooth extraction took place in one of the operating rooms with everyone and everything fully sterile. True to his word, the Happy Juice the doc gave me had me quite drowsy. it also made me slap happy — I told his nurse that she had beautiful blue eyes (she did!) and I’m pretty sure I even proposed to her!

As the surgeon predicted, I dozed off and woke up several times during the extraction, but I was too loopy to care about much of anything. Once I woke up to find the doc across the room, with someone holding a phone to his ear. Uh, doc… I’m over here! I thought. Deciding that I was just dreaming, I dozed off again.

I woke up with my mouth full of gauze and the doctor leaning over me, dressed in his street clothes. “Everything went great,” the doctor said. “We’ll keep you overnight and if there are no problems, you’ll be released about noon tomorrow. I’m not going to speak to your parents because I have to go. Someone was kicked in the face by a cow and they need emergency surgery.”

And I thought that I was having a bad day!


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