In My Shoes: God Sent Us You

Thursday, September 11, 2008

God Sent Us You

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To everyone who has been there for Fiona through her illness, thank you. You support and prayers have meant so much to us. Hopefully, we will continue to get answers as the battle is far from over.

Fiona spoke with her UCLA transplant coordinator and the UCLA doctors are still recommending that she have her right lung removed. Our doctors say this is all but impossible with her dangerously low platelets. They simply couldn't keep her from bleeding to death. They would consider it only in a very extreme emergency. So even though we made a huge step forward, she is still struggling with very serious issues. Please continue to pray that the doctors receive wisdom and guidance in making the best decisions for her.

She also found out that UNOS (the US organ procument agency) doesn't give exemption points for low platelets. So she doesn't get any help there. However, the UCLA coordinator did say that her liver doctor wanted her on the list in case she had huge lung bleed. At that time they would bump her up the list and offer her an organ.

Today Fiona was very blessed in being able to go to her sewing class. We have been having problems getting her there because the classes are only during the day and I am not able to take her. Remember she is not allowed to drive anymore. Her sewing teacher actually came and got her. You know, blessings are just flowing our way right now. This was a truly heart warming and uplifting experience that lifted Fiona's spirits so much. Thank you, Donna. You can't even imagine what your simple gesture did.

One Day At A Time...that is all we have
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.