In My Shoes: Curiouser and Curioser

Thursday, December 4, 2008

Curiouser and Curioser

We finished for today and Fiona and I must say this was a very important day in her life. We finally have met a team that is very interested in her and wants to know what is causing all her problems. They will determine if a transplant will really solve the problems or if another treatment would be better. They kept asking, "Did you know this was wrong? What have the doctors told you about that?" We have heard some of the problems they asked about but no one ever seemed that concerned. They are even wondering what her proper diagnosis is. They said in the end we will have answers. They won't stop until they know Fiona inside and out!

What we found very interesting was as we sat there they were calling her doctor right on the spot with questions. Holy cow!!! These people are going to talk to our doctors??? We just can't say how pleased we are. I think, if they accept her we have found our place! AND.............they totally agree with us that we shouldn't just be cutting out organs without really knowing what is going on and if it will help or not. AND............yes, someone finally agrees with me that a needle liver biopsy is unsafe for Fiona! Holy Cow, I think we died and went to Heaven.

It is funny, the last two mornings, as we were driving to the appointment, we heard many advertisements for the center and were shocked. We have never heard advertisements on the radio for the center. We both looked at each other and wondered if this was a message to us?

It was a very good day. We truly felt like we had a guardian angel with us.
Peggy

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1 comment:

Anonymous said...: We love you all! Adn are just praying for answers and a new beginning! XOXOX; December 8, 2008 at 6:36 AM

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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.