In My Shoes: More News

Friday, October 24, 2008

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Yesterday Fiona saw the liver doctor and we discussed her recent listing for transplant. After a long discussion we expressed our frustration with her lungs bleeding and feeling that we really didn't get the answers she deserves. The whole sit and wait for more terrible things to happen just isn't appealing. So we are going for a second opinion. The liver doctor isn't sure this will be productive but he agreed it was appropriate. We were glad to hear that another very fine liver center in LA could be used so we don't have to go out of the area for this consult. Our other choices were San Francisco, San Diego and Florida. We would just like to hear what another team thought because Fiona is so unusual that doctors are just scratching their heads and are not in agreement as to the correct path to take. This referral shouldn't take too long as we have all the tests done. They will just need to redraw blood levels as they can't be more than a month old but that is easy!

On the current health front Fiona is sick. She has some viral bronchitis type stuff. They put her on antibiotics and we found out that it is one she isn't suppose to take anymore so the liver doctor switched them yesterday. UM, the list of medicines she can't take is getting so long. Either she is allergic to them or because of liver disease shouldn't take them. She also has become very anemic so they added iron to the mix. Again this is all part of liver disease, it is progressing and we have to manage the symptoms.
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.