In My Shoes: HUH?

Saturday, August 30, 2008

HUH?

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Fiona got her letter from UCLA and it says that they are going to represent her again after talking to her regular liver and pulmonology doctors and resolving the outstanding issues. (the indication for a liver transplant--um didn't we already say why?) I find no hope from this letter and in fact, I find that very cruel and it tells me that they don't know what the heck is going on. It also tells me that the team is not in agreement on what should be done. No matter how it is sliced it is still NO but definitely time to go somewhere else for a second opinion.

Accepted or not, nothing has changed for Fiona. She still coughs up blood on a daily basis. She is tired all the time and struggles with all the problems related to the liver disease. Amazes me that "the team" decides that this is all OK and is better than taking the risks of transplantation because you can die in transplantation. Am I crazy to think this is NOT NORMAL? Wonder what they would decide if it was one of them? As Fiona said, "I get up every morning wondering if I will drown today in my own blood?" Wow, now there is something a 20 year old should have to worry about.

Liver disease and the world of transplantation is not for the faint of heart or the weak of spirit.

Peggy

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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.