In My Shoes

Sunday, January 10, 2010

Doctor's appointments went well this last week. The Endocrinologist is really concerned about her bones. Her calcium level has improved but her levels are at the bottom of normal. She already takes 3600 units of calcium at day! He was going to increase her calcium until he realized she has kidney stones so for right now he is keeping everything the same. She is well covered for hormones, vitamins and calcium for osteoporosis. After transplant, which he wants to hurry up and get done, he will put her on Fosamax and try to rebuild some of her bone density. He is concerned, since after transplant her bone density will get worse because of the steroids. :( That was not good news but at least they are actively watching and planning the next stages.

Pulmonologist was pleased that she has been more active with no coughing up blood. He feels her lungs have stabilized with reducing activity. YAY! Good news.

Fiona is still waiting to hear from the transplant center. The coordinator said they had committee meetings Friday and she was going to ask the surgeon what was going on. She hasn't heard anything either, so maybe Monday we will know more. Got our fingers crossed things are progressing.

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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.