In My Shoes: 21 years ago

Friday, June 12, 2009

21 years ago

One of the problems we are encountering right now is so much of Fiona's disease and it's management started 21 years old and we have changed doctors and medical facilities. Medical records are archived and they are working with paperless systems now. Just complicates everything. So, Fiona called the surgeon who did all her surgeries and was in charge of her case for the first few years and asked him to talk to her current team. He questioned what was going on, how she was doing and agreed to help her out. He is pulling all her records out of archives, reviewing them, calling her team and sending the records to her team. He said he will help get to the bottom of this mystery. I remembered him as being wonderful and helpful, but you would think 21 years later he wouldn't necessarily want to get involved again. Most doctors would just say to pull the records. Sometimes God points to the right path and you just have to listen and follow. Today we are being carried!

The pulmonologist is very interested to see the reports and to look into the possible diagnosis of pulmonary artery bronchial sling syndrome. This is what the original pathologist suggested might be present at the time of her kasai surgery. The pulmonologist said he had never heard of it. I googled it and it doesn't sound like anything Fiona has but still worth looking into since she has a HUGE bronchial artery which is causing some great confusion as it whether her lung disease is liver related or birth defect.

We are very anxious to see the liver doctor this week. Hopefully we don't scare the heck out of him with all our questions and "thinking outside the box" ideas. Might have to ask for a crash cart in the room. :) Sorry we have an early appointment. We need to have the last appointment of the day so we aren't rushed. Fiona warned him we have a ton of questions and I know he will take all the time we need to give us the answers or get us to where we can get the answers. If anyone can think of a question let us know. We are open to anything.
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.