Tuesday, June 29, 2010

Time Heals All Wounds

I'm 12 days post-op now, but this picture is 11 days post-op. I think the green is really starting to heal and the swelling at my ICD site is going down. The tape is still on the incisions because I was told they would come off on their own. I would never remove them and I am going to wait until they peel off naturally, but I'm starting to wonder what my incisions actually look like and what the scars might look like. My ICD scar has been thick and keloid. It's been keloid since it was a pacemaker scar, which is what I had first.
I got my first pacemaker when I was 11 years old and since it's been 12 years, I honestly don't remember my chest without it. I didn't like it, though, because it made me asymmetrical, which is funny to say now, looking at these pictures with my open-heart scar all slanted. I wasn't exactly cut right down the middle. But 12 years was a long enough time to get over my initial feelings of that scar, along with everything else that was "wrong" with my body. After the high school need to fit in and be perfect subsided, it became a real chore to hate the evidence of my survival.

And yet, I can't help but wonder if maybe this new ICD scar won't be keloid. And if both scars aren't then it will be the closest I've come to symmetry in a long time. Which was not even something that I even thought was an option. Every time I go back in to the hospital something new happens that I never even thought was possible. It never occurred to me that any lead or device or anything would be put on my right side. You'd think after 12 years and four different implantable devices I would start to expect the unexpected. I continue to be amazed every time.


Saturday, June 26, 2010

When a Heart Breaks, It Don't Break Even

I figure that it's mostly going to be people who have or know someone who has congenital heart defects reading this, but just in case there is someone reading who isn't familiar with the terminology, here's a little vocab lesson. That is one long sentence.

Congenital Heart Disease- one or more defects in the heart that occurs before birth

Shone's Syndrome- a condition made up of multiple anomalies on the left side of the heart involving the aortic and/or mitral valve(s)

bicuspid valve- a valve with two flaps instead of three

coarctation of the aorta- a narrowing of the aorta

atrial fibrillation- rapid, uncoordinated contractions in the atria

ventricular tachycardia- rapid, dangerous heartbeat caused by faulty electrical impulses in the ventricles

Implantable Cardiac Defibrillator (ICD)- a device implanted under the skin that sends electrical impulses to the heart to control rapid or irregular heart rhythm.

pacemaker- a device implanted under the skin that paces the heart when it gets too slow

lead- the wire that connects the pacemaker or ICD to the heart

I got my definitions from www.congenitalheartdefects.com and they have many more terms and definitions if you're interested.





Friday, June 25, 2010

It's Not Easy Being Green


I'm on blood thinners, so bruising is not new to me. In 10th grade, I collided with a really big piece of PVC pipe and experienced a rainbow of colors extending from my jaw (the site of impact) all the way up my right cheek. But the kind of bruising I'm experiencing from my biventricular ICD and lead implant is a little different. First of all, I'm green. I skipped all the blue and purple and just went straight to green. I'm the color of that yellow-green crayon in the box that we all used for coloring grass (but we all know that the jungle green crayon is the prettiest green in the box). I'm ten days post-op and despite the appearance, I feel pretty good. The weird part is (and I'm sure there are multiple weird parts), the swelling and the actual ICD is fairly clear of bruising. The green is mostly on the side where the tiny lead was placed. But "placed" is not exactly the right word, because as I was told, that lead was "jammed in my chest." Why? Because there is so much crap in my chest that they really had to force it in there. There was no room on the ICD side and they spent three hours trying to get it in there. They also struggled with getting it on the right side, because they weren't able to string the wire and guide it through a vein to my heart. They forced it through my pectoral muscles and under by ribcage to finally get it to my left ventricle. And they almost gave up and closed me up, deciding to go through my side and place the lead on the outside of my heart. The entire procedure took six hours. I am so grateful for my surgeon and all the doctors and nurses who were involved in my procedure for making it so clean and not giving up.

On a less serious note, when I was thirteen I did a production of "The Wizard of Oz." Guess who I played?

That's right: the Wicked Witch of the West. Funny.




Welcome to the Jungle

Welcome to the jungle. I write that because I feel like I am very much in uncharted territory. I certainly have never written a blog before and I'm not sure that their are any blogs out their about someone chronicling their life with CHD. Of course, if there are blogs like that I'd love it someone brought them to my attention.

Here are the basics: My name is Clare, I'm 23, and I have Congenital Heart Disease. My specific condition is Shone's Syndrome. I've had nine heart surgeries; my most recent one being nine days ago.

I really want to write about my heart, because I don't think enough people with CHD are. And I have all kinds of crazy metal devices keeping me alive and enough stories to fill a book or two. My hope is to finally get all my thoughts about my heart and my life out of my head and onto paper (sort of). And for anyone with an artificial valve or pacemaker or ICD (Implantable Cardiac Defibrillator), I hope I can give you something to connect with, that will help you feel less alone, and maybe make you laugh.