In My Shoes: Monday Update

Monday, February 18, 2008

Monday Update

I spoke with Fiona's liver doctor and he said this is so out of his knowledge that he has to trust the pulmonologist and cardiologist on these matters. I expressed by great FEAR and concern about this right heart cath under exercise and he felt with platelets it is feasible. I told him we were all really scared and I'm not sure Fiona could even emotionally do it and he said she should try as it will give them information they need. He said this is so unusual with the possibly of a hole in the heart that opens only on exercise. Otherwise, the next step is a left heart cath and that might not show the hole as she will be out for that test.
Meanwhile, we have another pulmonologist reviewing all her records today. I will feel better hearing another doctor's opinion and this doctor knows the AVM specialist in San Diego. So I have my fingers crossed!!!
Fiona meanwhile has a HUGE BLACK EYE. She got a pimple on the inner part of the bridge of her nose and her eye swelled shut and is black and blue. Taking her to urgent care tonight to be sure she is ok. Never seen anything like this before. Poor, poor Fiona. It never gets easier.

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.