In My Shoes: Mixed Emotions

Thursday, August 28, 2008

Mixed Emotions

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Yesterday I got the call...and it looks like they aren't going to list me. Even though it wasn't a for sure NO I can just tell by their explanation. My coordinator over there said that my lung problem is not liver related and they don't think that it will go away with a transplant but they want the liver doctor over there to contact my doctors at Kaiser and ask them why they think I should be transplanted. After I hung up I cried a little and then called my mom and told her the news. Then after that I sucked it all up and went out with my friend whom I had plans with. We had fun even though deep down my heart was broken and I wanted to cry. Right now I have mixed emotions. I'm disappointed and sad and confused. I'm not really sure where to go from this point. I feel like they have let me down one too many times and I just don't even know how to pick up the pieces and move on. I've been fighting this battle for 20 years now and I feel like every time I lose and sometimes I want to give up but I know that I can't because I would be giving up on everything that I have ever fought for. I feel like there's no light at the end of this tunnel of broken dreams and heart-filled pain. Even though I have the great support from all my friends and family I'm just not getting the support from the people who could really make the difference. At this point the only thing I have left is a plan:
1. Move on
2. Get a second opinion
3. Get this lung problem fixed even if it means no transplant
4. Figure things out
5. Get a job and carry on
6. Go back to school and make it through
7. Move out and live my life
I'm just trying to do the best that I can at this point. It's too late in the game to shut down.
Fiona

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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.