In My Shoes: Frustrated Tears

Sunday, February 24, 2008

Frustrated Tears

Ok so I'll put it bluntly THIS SUCKS!!! Here I am again at the point where my doctor has thrown the term pulminary hypertension at me and all I can do from this point on is cry because honestly I don't want that if any thing I'd rather have a hole in my heart or hypatta-pulminary, ANYTHING ANYTHING but pulminary hypertension. And it doesn't seem fair that just because the liver is causing damage to the heart yeah it's permenate but if they catch it early enough why wouldn't they still transplant because um helloooo the liver is causing the problems so wouldn't you think that by getting a new one it would stop the problem and let me tell you if it was some doctor or head of whatever in the liver clinic at UCLA they would change that rule so fast or gee maybe if I had a million dollars gee maybe then they would re-think it but let me tell you unless you got a million dollars you better hope to God that there's an angel looking out cause you can get screwed. But it ever since my doctor has been speculating again that I have pulminary hypertension all I can think about is ok well if I do then what is going to happen will I eventually die from this will I still have hope of getting a transplant (which I been told absolute NO) or will my liver hold out for a long time. I just hate being in this position I hate having all these test done I don't like them doing all the right heart cath. shit I mean no matter what THEY want and the end of the day I'm the only one that has to go through it I'm the only one that has to live with it and where does that leave me? Sometimes I really feel alone because nobody else has to go through what I go through and I would never want anyone to go through this, not even my worst enemy no one should have to live with the pain of not knowing what will happen to them. And, I love talking to other liver people because sometime I feel like they only really know what it's like.This is all just so hard to go through day in and day out and it's taking an emotional toll on me and my family and everything lately has been a big roller coaster ride and I and feel like I'm holding on for dear life.
~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.