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.

Scars Are Souvenirs You Never Lose

I had my follow-up appointment on Tuesday and the strips are off! The verdict? Things look good. There's still some blood around the ICD causing some swelling, but it's not red or painful so it should be absorbed, making the area smaller soon.

As far as scars go, I don't know what I was thinking when I was writing about how I hope my ICD scar isn't keloid, because um, it's really keloid.

How did I think it was going to completely clear up? I know they said that they were going to try to clean it up, but I was thinking some miraculous transformation. Not quite. It's ugly. And I hate to be a complete hypocrite, but I'm a little upset with how unattractive it looks. I know it's still healing and that it's going to get better, but right now, it looks pretty bad. My lead scar, on the other hand, looks like it might eventually fade into nothing. Man, it would suck so bad if that one got keloid. My need to be symmetrical is not so great that I want my scars to be identical. The lead scar is so tiny and clean that compared to the other side, it looks like nothing already.

I'm using another word that I should probably define:

Keloid- when a scar is UGLY

I'm kidding. That's not the real definition. Here it is:

Keloid- an area of irregular fibrous tissue at the site of a scar or injury

The green is also clearing up nicely and I'm able to move my arms a lot more. Not above shoulders, because I can't do that for three more weeks (so the lead and ICD and settle), but I'm doing a lot more movement that involves my pectoral muscles, because they're healing, too.

I feel almost back to normal. If you can call it that.

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.

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.

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.