In My Shoes: Tough

Tuesday, February 26, 2008

Tough

No matter what is said about life I know I’ve come so far but with everything that’s happened I’ve learned that little bit of me bleeds every time. And now the truth only seems like a stranger and I’m just so sick of playing all these games. It just seems like I keep getting caught in the rain with no where to run. And I’m just distraught with pain knowing that things may not go the way I had planned in life and my chance for a transplant may never come. Sometimes I just want to cry out until I’m saved even though my chances seem so far away. All I can do though is tell myself that I can make it through the rain and that I’ll come out stronger than ever when this is all over. Then I will be able to live my life once again. It’s just hard when all you can do is smile even though you know that all the sorrow and pain you have deep inside shows. I just want to get everything over with and I’m so sick of fighting for my life all the time. I’m at the point in my life where you shouldn’t have to worry about whether or not you’ll be able to make it. I just want to say to my mom that I would be nothing without you. You have always been there for me when I needed it the most and you are just everything that I wish I could be. You have helped me so much through all of this and I’m just so grateful to have you as my mother. And sometimes I do feel bad that I have to rely on you so much but it’s nice to know that you are there when I need someone. I just have to say that now with everything that is happenning I sometimes start to feel lost and in the dark. I just never know what to think anymore and I hardly know what to believe. And it’s gets hard at times to see people around me doing all the things that I should be doing or even getting things that I want and dream of. I would just like to be able to have my life back because right now I feel like I hardly have one. I just want to go back to school and do things like get married and have a family. But now all those things seem so far out of reach and I wonder if I will ever even get to do any of that. It just seems unfair that here I have this big road block in my life and I have to worry about getting past it while my friends and people I know stroll on the easy street. I would give it all to just have what others have.

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Biliary Atresia

Biliary atresia is a condition in which the ducts that carry bile from the liver to the gallbladder and small intestine are not normal. These ducts can be injured, blocked, or missing. When the ducts that carry bile out of the liver are closed, bile backs up and damages liver tissue. In time the liver can develop scarring or cirrhosis. The gallbladder may also be abnormal or missing. The cause of Biliary Atresia is unknown. It occurs in one infant in every 15,000 live births. It is a serious disease which requires immediate surgical and medical treatment.

Arteriovenous Malformations AVMS

I have been diagnosed with AVMS in my lungs do to my liver disease. These have caused me to have 2 lung bleeds which were very scary. I still have more AVMS and they are causing me breathing problems. Below is an explanation of what the AVMs are and a picture of what is happening in my lungs.

Arteries and veins are part of the human cardiovascular system. Normally, the arteries in the vascular system carry oxygen-rich blood at a relatively high pressure. Structurally, arteries divide and sub-divide repeatedly, eventually forming a sponge-like capillary bed. Blood moves through the capillaries, giving up oxygen and taking up waste products from the surrounding cells. Capillaries successively join together, one upon the other, to form the veins that carry blood away at a relatively low pressure. The heart acts to pump blood from the low pressure veins to the high pressure arteries.
If the capillary bed is thought of as a sponge, then an AVM is the rough equivalent of jamming a tangle of flexible soda straws from artery to vein through that sponge. On arteriogram films AVM formation often resemble a tangle of spaghetti noodles. This tangle of blood vessels forms a relatively direct connection between high pressure arteries and low pressure veins.
The result is a collection of blood vessels with abnormal connections and no capillaries. This collection, often called a nidus, can be extremely fragile and prone to bleeding.