In My Shoes: Happy Thanksgiving

Wednesday, November 25, 2009

Happy Thanksgiving

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Happy Thanksgiving to our friends and family

Fiona hasn't heard much else at the moment about getting exemption points. The reports and data have not been sent to UNOS. The transplant coordinators are talking and apparently all the information is at the appropriate places for doctors to review and then write up the report but this has not happened yet. So she waits. She was hoping to hear about getting the exemption points this month but that doesn't appear to be a possibility now. Maybe after the first of the year.

Then she heard her liver doctor is out on medical leave for a month. We were really worried but found out it was a sports injury so all will be well soon. Whew!

Fiona found out the experimental drug she took early this year as been totally taken back by the pharmaceutical company. I guess there were some serious life threatening cases of blood clots. Since she had the severe leg swelling during the trial, the pharmaceutical company is requesting her ultrasound. Sure glad it wasn't related and that Fiona did very well on the drug. I hope they can tweak this drug enough to continue the trials because it was a really good product that could make a huge difference in a lot of people's lives.

Happy Thanksgiving and thank you for all your prayers and good thoughts.
Peg

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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.