In My Shoes: I Am Blessed

Saturday, May 31, 2008

I Am Blessed

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Yesterday our day started off with Fiona having another lung bleed. What she coughed up was really bright red and clotty looking. We couldn't get a hold of any of her doctors so Fiona called her new TX coordinator. HOLY COW are we blessed. That woman can part the Red Sea. At first when Fiona was telling her what was going on, she began to freak out, not having dealt with Fiona's lung bleeding problems, but as Fiona explained it more, giving her history, this lady went into action. By the time we got the ER, ER had already been spoken to, labs and tests were already ordered, the pulmonolgist was calling me on my cell phone as we were walking in. It was absolutely amazing. Fortunately, she didn't need to stay but if she bleeds again like this last one we are go in again. Good news is there was no blood pooled in her lungs and her labs were much lower than last week. So as we were leaving I told Fiona to call the TX coordinator back to let her know she was ok. The coordinator was really glad she was ok but she was upset it is so ambiquous as to when we take her in and when not to, that she wanted exact answers. She said she wasn't comfortable with never taking her in, as one doctor sais, or waiting for a coke-sized can full of blood, as yet another doctor said. She is on the same page as we are! woo hoo. So if we can't get answers at the next pulm visit she will. The Lord is smiling down on us!

P.S. Mama Julie, we have another MAMA on our team! Between the 3 of us we should ROCK

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.