Doll Parts

My family has a beach house that we rent out during the summer. The main living room as two sofas that are pretty comfortable, except for a couple of the arms. The cushioning has disintegrated and you can feel the hard wooden structure beneath the the blue and green striped fabric. Don't tell anyone.

I bring this up because almost eight months post-op, the swelling has subsided, but the wires are poking through. The third wire juts out right along the new scar and then disappears under the my chest muscle and sternum and reemerges on the other side. I feel like a doll or a stuffed animal who's exterior has been worn down to the core. My stuffing as been slowly seeping out and my wires are protruding. Even though the wires are new, it makes me feel old, like I'm falling apart and here are the nuts and bolts that are holding me together.

As of right now, I have four different metal devices keeping my heart working: a biventricular ICD, a mechanical aortic valve, and two titanium VSD occluders. Not to mention the three wires.

VSD occluder- a small metal device used to plug up a ventricular septal defect

ventricular septal defect- a defect in the septum between the right and left ventricles; commonly called a "hole"; most common heart defect in a newborn (www.americanheart.org)

Sometimes I just feel like a robot.

Under Pressure

I'm a bad heart patient.

1. I lose prescriptions for medication that I need for my heart.

2. When I finally get that prescription filled, I take it twice a day.

3. I'm supposed to take it three times a day.

4. I forget when I need to test my blood.

5. When I remember to test my blood, I forget to call the coumadin nurse to report my results.

6. I still haven't hooked up my new device-transmitter machine so that my cardiologist can read my ICD over the phone.

All that being said, I am not terrible at keeping track of my health. But I'm tired when I get home from work and I forget that I need to check my blood and make a doctor's appointment. I forget that my health insurance still hasn't sent me a new insurance card since that CVS stole and then lost my original. I forget that I need to update my blog and then I stay up way too late in order to do so when I know it'd be much healthier to get more than five hours of sleep tonight. Part of why I fail to remember all of those important things is because I forget that I'm "sick" because I feel fine.

I'm eight weeks post-op. Things are looking really good. The swelling has gone down so much on both sides. I can finally tell exactly where my ICD is. And it's either a lot bigger than my first ICD, or it's closer to the skin. I feel like this one is more visible. My lead scar is a little red, but is healing nicely for the most part. The area around it is a little raised, but I think that's how it's going to be.

I need to post some pictures. I'm going to sleep first.

I'm Not Crazy, I'm Just a Little Unwell

I am 5 weeks post-op. And for the most part, things are good. I've had more trouble with bleeding from my lead incision, so I went in to the hospital to see what they thought. They just gave me gauze and tape. And I didn't have any more trouble after that. So then Monday I got the most incredible pain ever right by my ICD and extending half-way down my arm. It didn't last that long, but it was enough to concern me slightly, especially because the ICD site is still swollen. There's also this purple splotch at one end of the incision, which is kind of gross. It hasn't bled yet, but it looks like it has that potential.

So yesterday I had my synchronizing appointment. It's the day where they basically mess with my ICD while they echo me and adjust my device to get the best results for my heart function. I knew it was going to be a long appointment, but I didn't realize that most of that time would be spent waiting. Waiting to see my doctor, and then waiting for blood work, and then waiting for a chest x-ray, and then waiting to be synchronized, and then waiting to get the okay to leave. I'm the first person to say that I don't handle this well. Any of it. Surgeries, making appointments, filling prescriptions, everything. And up until this point, I've kept it together like a champ. But yesterday I was tired and I realized that I was going to use up more sick leave than I had and I just wanted to go home. So I had a little meltdown in the clinic waiting room. And there were a decent number of people there watching me cry. But I feel okay crying in that environment because um, look where we are. You're not going to spend half your day at a cardiologist's if you're healthy.

That's another thing that will probably become apparent, if it isn't already. I'm a "why me?" person. It doesn't happen when I'm healthy. So most of the time I'm a happy, not feeling sorry for myself person. But when I'm having surgery and my health is in question, I like to break out the party hats and throw a pity party for myself. If I'm having a bad day, I'm going to ask "why me?" Because it's not just that I can't find my car keys and I forgot to tape my favorite show and my brother's annoying the crap out of me. I have heart disease, too.

So yesterday I cried. Because I had to wait a long time, and I was running out of sick leave, and I was really tired. And I had heart surgery.

Sunday, Bloody Sunday

An interesting thing happened on Sunday. Can you guess? It started with a shower that I decided to take at midnight. I had some crazy idea that I was going to get up early and write (which didn't happen) so I thought showering the night before (read: early morning) would be a good idea. At this point in my recovery, I really wasn't expecting any bleeding, despite the fact that parts of the incisions are still scabbed over. That's my big fear. Post-op bleeding as been the greatest recurring disaster of my life. So seeing blood dripping from my incision = not okay.

I'm not used to having two incisions at the same time. I don't know which to be more concerned about. Before Sunday, I would have guessed my ICD incision, that being the one with the pocket of blood that has yet to dissipate. But sure enough, the blood trickled from the right side, not the left. For a moment, I was panic-stricken. I thought it was my wisdom teeth all over again (another story for another post). I was 18 days post-op and seemed to be healing nicely and consistently. But it turns out, it wasn't a big deal. I must have disturbed a scab, so I put some pressure on it and then a band-aid and went to bed.

Sunday was the Fourth of July and to celebrate, the whole family went to Maryland to visit my aunt and uncle and cousins. It was a long, hot day and somewhere in the middle of the afternoon I got tired and laid down on the couch to close my eyes. At first I was on my back, because I knew that sleeping on my side was probably a bad idea--the incision was very pressure-sensitive. But I couldn't stretch out because the other half of the couch was occupied by a rottweiler. So against my better judgment, I curled up in a ball on my side and went to sleep.

I awoke to my cousin, Kevin, staring at me like I was an alien. Maybe he was just staring at me like I had just bled on his couch. We even exchanged "Hey, what's up, how are yous" before my sister-in-law, Emily, informed me that I was bleeding. Sure enough, there was a bloody trail leading from my incision, down my shoulder, to the couch. It was really fortunate that the couch happened to be black and leather, so you couldn't even see the blood and it was easily wiped off. But let's face it: when someone bleeds on your furniture, even if they're family, it's pretty disgusting. Sorry Chris and Tina!

The second instance of bleeding was fixed the same way as the first one and I stopped sleeping on my side. The picture's not great, but hopefully you can see the dark scab on the end of my lead incision. That's the site of the trouble, which is under control for right now.

In other news: the green is basically gone and the ICD incision is looking a lot better. I'll have to redact my previous statement of how ugly it is. It was very swollen and bruised when I wrote about it the first time. I can see now that my new incision is really nice and clean, and even though the keloid from the old incision is still there, I think it's been reduced in size and appearance.

The rest of my physical recovery is going fine, as well. I had my first full day of work today and I feel just as tired at the end of the day as I did before my surgery. It's good to be back.

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.