In My Shoes: Waiting

Tuesday, July 1, 2008

Waiting

Still at a stand still and waiting on the tx eval. Guess Disneyland was harder on Fiona than we knew. She has had more problems with bleeding. Coughing up more frequently and more in amount. Almost hopes she coughs up some at the eval. Wouldn't that be nice! No doctor's appts until after the eval. 20 more days and counting

Peggy

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1 comment:

Laurie Johansen said...: The waiting has to be the hardest. To sit there waiting on doctors to decide your fate. Fiona, you are my hero. Peggy, you are an amazing mom. And to Lauren and MJ, you hare the worlds greatest sisters.

You all are in my prayers especially Fiona. I pray for patience for you all as you wait and I pray for wisdom for the doctors as the decide what is best for Fiona.

In His Love,

Laurie Johansen; July 1, 2008 at 5:09 PM

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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.