In My Shoes: Happy Halloween

Saturday, October 31, 2009

Happy Halloween

Fiona saw the liver doctor and the pulmonologist this week. Everything is pretty much status quo. All the tests results have been sent to the transplant center and they should be sending all her information to UNOS next week. UNOS has 30 days to respond to the request for exemption points. The transplant center is asking for her MELD to be raised to 18. If this is accepted, then every 3-6 months (depending on how UNOS rates her) her score will go up 10%. If all goes well, she will be in line for a liver in 6 months and be close enough to actually be offered a liver.

While going to the pulmonology appointment, Fiona fell down a flight of stairs and got really bruised. She is OK and she did manage on catching herself so she didn't go down on her face!

In talking to the liver doctor, Fiona asked him why he keeps asking her if she really wants a transplant. She again told him that she wants to get better and what they are doing is good, but it is just a bandaid. The liver doctor laughed when he heard how the first surgeon that came at the last visit wanted to take out her lung/spleen and do a liver bypass. He said there are liver patients, there are biliary atresia patients and then in a category all by themselves is FIONA! He said it is so hard to know if the liver transplant is the right way to go or not but he said if she doesn't get one the next couple years are going to be pretty scary! Wow, now that sets you back on your heels, doesn't it? That is one of the first times I have heard this very calm man worried. So fingers are crossed and hopefully UNOS will see how important these exemption points are.

Hope everyone has a Happy Halloween!
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.