Cyst la vie! (That’s life!)

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

There are THREE new Cardiac Kids in the blogroll –Luke,  Nathan 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!

Tags: brain, Congenital Heart Defects, Dilantin, doctors, Endocarditis, loading dose, neurologist, seizures