Wednesday, February 29, 2012

When you miss something you shouldn't

It felt like home I guess you could say. Something that was there, constantly. A comfort.
All my life I had a heart murmur. I had my own stethoscope and I loved listening to my heart. I loved hearing my mumur. I knew exactly where to put the stethoscope to hear it best.
When I went into heart failure (though at the time I didn't realize it was a heart failure) my heart got enlarged. It dilated and it was up against my breast bone. It made walking very painful, but I could just lightly lay my hand on my chest and feel my heart beating away.
Appearntly you shouldn't feel that.
After surgery my nurse realized you could no longer hear my murmur. She let my mom listen and then gave it to me to listen. (and I mean this was RIGHT after I woke up, I still couldnt see anything). I imediatly grabbed it out of her hand and moved it to the perfect spot where it was best heard. But it was gone. And in the moment, my world crumbled a little.
Eventually after being released and going home I realized I couldn't lay my hand on my chest and feel my heart anymore. I couldn't help but cry. Not only did I just have my chest cracked open, but two things that comforted me so much where taken away.
I know its best they are gone. They weren't good. I get it. But they where reminders, that I am alive. No matter how rough the day was, my heart is still beating. To hear that murmur, to feel my heart beat, it comforted me. It reminded me I'm still alive and kicking. My heart is seriously messed up, but yet, its still beating away. So no matter how bad and messed up the day was. I can carry on.
And now that's gone. So what do you do when you miss something you shouldn't?

Monday, February 27, 2012

we meet again, coumadin.

It's been 2 years and 3 months since the last time I've been on coumadin. At least.. something along those lines, I was taken off in December of 09, 6 months after OHS.

I never liked coumadin, only for the simple fact that I hate needles and blood. That's why in September of 2011, I found out the maze procedure failed and I would need to be on blood thinners again, I got sad. Well maybe not sad, it is just a stupid pill after all. But I wasn't happy about needing it.

But then they told me about this wonder drug. A blood thinner that didn't need monthly blood checks. Pradaxa. I was quite excited. WOOHOO for no more blood draws! But once I got out of the hospital I noticed some side effects. At first it wasn't to big of a deal, but then it got worse.

Seeing Spots
Near Constent Headaches
Unecplained Joint Swelling
Extreme Exhaustion

At first I thought it might be another drug (TIKOSYN) that they started at the exact same time as the Pradaxa. But then a friend on FB, another adult CHD messaged me saying that he had these same symptoms when he was on Pradaxa and had to be taken off. So I looked into it and brought this info to my primary care doctor. We decided it would be best if I ween off the Pradaxa and back onto the rat poison (coumadin).

Yes coumadin is what rat poison is made of.

And you know what, after all the side effects of Pradaxa. I'm okay with needles now!

So heres to hoping I start to feel better! He also even put me on a new pain med cause I'm only allowed tylenol and tylenol doesn't do shit for me!

*fingers crossed*

Wednesday, February 15, 2012

Baby Adam

Babie's shouldn't die, yet, they do.

Let me introduce you to this handsome little man. His name is Adam. Or as some called him "Baby Adam" or "Bubbi."

Friday the tenth at a little funeral home in Saint Helen's Oregon a bunch of people gathered to celebrate this litte babies life. Why? Because he went home to be with Jesus about a week before. Let me tell you a little about his life.

Adam was born June 6th, 2010 with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS).

Adam was able to hold out til he was 6 weeks old before his first open heart surgery. And shortly after he was put on the transplant list. Adam has his set of complications but at 15 months, September 2011, Adam got his miracle heart. Adam did okay but had complications. He was able to make it home one last time for Christmas with his family. In January Adam got an infection and on the night of January 28th, 2012 Adam went to be with Jesus.

Adam proved stronger then anyone thought, making it to 6 weeks before his first surgery proved to everyone how much a fighter he was. He touched many lives, especially mine.

Adam was a true CHD warrior, now he's a beautiful CHD angel. He is loved and missed by everyone who knew him, and even by many who never got to meet him.