Let It Bleed

I blew a 3.4 last week.

It wasn't a breathalizer and so "blew" isn't the correct verb, but alcohol was definitely a factor. I was testing my INR aka my coumadin level. DUN DUN DUNNN....

INR- International Normalized Ratio (for blood clotting time)

coumadin- a blood thinning medication used to prevent clots

So, FYI, you shouldn't test your blood twelve hours after you have two gin & tonics. It's just not a good idea. You also shouldn't take your coumadin after you have two gin & tonics. Oops. Monday was rough. So Tuesday morning at 7 AM, I used my home self-tester, did the finger stick and got a 3.4. For most people with a mechanical heart valve, the normal range for INR is 2.5-3.5. But I'm a bleeder, so my range has been lowered to 2.0-3.0. Double oops. I was wondering why I was getting all these bruises. But the solution was easy. At the suggestion of the coumadin nurse, I skipped my coumadin that night, took my regular dose the night after and then tested my blood the following day. So last Thursday my INR was 2.1. Perfect.

I think my thoughts on coumadin are best summed up in a haiku that I wrote yesterday.

Devil and savior

Watch out clotters and bleeders

Oh, coumadin

I haven't written a haiku since the fourth grade. I think you can see why. My lacking poetry skills aside, coumadin is tricky drug. It can really help and it can really hurt. It's a balancing act. Your blood can't be too thick or you'll get a clot. But your blood can't be too thin or you'll bleed too much if you get hurt. Alcohol is also a blood thinner. Vitamin K (found in green vegetables) helps your blood clot. You have to watch what foods and liquids you put into your body as well to keep the balance.

I test my blood monthly (okay, sometimes every other month) but I make sure that it never gets too out of control. Clots have never been a problem for me, but clotting is another issue. I've had four-hour nosebleeds. I bled non-stop for three whole days after I got my wisdom teeth taken out (P.S. Worst idea ever). I've gotten huge hematomas at my incision site after two different device surgeries that required me to be readmitted to the hospital and then cut open again to "evacuate" the collection of blood. All those stories will have to be told in much greater detail another time.

To sum up, it's a love-hate relationship. One that people with tissue valves don't have to deal with. But their hearts don't make a clicking sound. So booyah.

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.

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.