In My Shoes: This and That

Saturday, February 21, 2009

This and That

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Fiona is still waiting to hear what is going to happen. Her liver doctor was taking classes this week so we don't know if he had time to call and "chat" with transplant team yet or not.

Fiona had a rough week with kidney stone pain. Of course, she can't get into her kidney stone doctor for a month. Jeez, that really helps. I think we are going to try to change doctors and see if she can get some answers here. I know they can't "cure" kidney stones and I know this is hereditary but someone needs to be more on top of this.

On other fronts, Fiona's oldest sister isn't doing well. Her immune disorder has really gotten worse. She is developing other autoimmune problems now as well. The doctors have thought with replacement immune drugs she was young so everything would be fine. Well, everything isn't fine in a big way.

The Air Force Concert last night was WONDERFUL! Really enjoyed it. I guess the band is recognizing us now. They thought I was Jill's MOM. Some members actually came out to meet us. :) So cute. I told them we are their Southern California Band of the Golden West Groupies and it was about time they had a concert in OUR town!

One of the band members has adopted (middle daughter) Lauren's golden retriever that she wanted to find a home for. Lauren and Jill are moving into a big house from a very tiny, tiny house and they could only have 3 dogs so Lauren had to find a home for one of hers. The gentleman that adopted the dog came out to meet us and he was so sweet. Totally in love with the dog and made the comment that that dog was best trained dog he had ever seen. I totally agree! I did tell him that Haden, the dog, LOVES water. Whenever Lauren brings him down, he is in my pool ALL the time, hot or cold outside. He swam all during Christmas break while they were here. But he is a sweet dog and truly will love his new family for years.

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.