In My Shoes: Wow, what a week and it isn't stopping anytime soon

Friday, March 20, 2009

Wow, what a week and it isn't stopping anytime soon

Sorry neither of us have updated. We have been so busy. Fiona has been on the phone coordinating everything for the biopsy, experimental drug, doctor's appts. I have been slammed with meetings and days that start at 3am and end after 8pm. Then Fiona was in ER yesterday for severe back pains. There is something going on with her intestines and no one can seem to figure it out. But this is the second ER trip in a month and it is becoming more and more concerning.

Next week is vacation and it is jammed packed with appts. Fiona has a dentist appt, ophthamology appt for the experimental drug study, pulmonologist, maybe an abdominal CT. The official date for the liver biopsy is April 15th. We have to be into LA at the crack of dawn so they can figure out if she needs transfusions or not. Now here is the funny part, the drug study people want to draw her blood before the procedure....um...what time does Cedars open? So I drive clear across LA to the one hospital, get blood drawn and then drive clear across LA in the opposite direction. If we have the blood drawn at our hospital then we have to have permission from the drug company and special paperwork...I don't know. The weekly appointments for the drug study will probably start next week as well.

NOW for the AH-HA.............
Remember when Fiona had her first appointment for the study drug they said that she had an abnormal EKG. Well we now know why. One of the drugs she has been taking for her intestines has just recently been found to mess with the EKGS but also is shown to cause some neurological problems. So she is off that med now. We will see if being off that drug will resolve the EKG problem. Just another case of, WE KNOW SOMETHING IS WRONG, but have to wait until we get more information to figure it out.

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.