In My Shoes: Between a Rock and a Hard Place

Friday, July 25, 2008

Between a Rock and a Hard Place - The Bombs Keep on Coming

Fiona saw her regular pulmonology doctor today. He spoke directly with the UCLA pulmonology doctor and here the plan..........they have to determine the source of her lung problems. This means is it liver, congenital defect, both or neither? She is going to have a CT angio, pulmonary functions, nuclear med lung profusion test, MRA of the brain and the lungs.

Here is the problem: The AVMs and bronchial artery affected are all on the lower right side. Why?? That is a question. O2s go to perfect with 100% oxygen...not HPS. Why? Continual bleeding puts her a great risk for a life and death situation.

If it is congenital, they will talk about taking out the lower lobe of her right lung...however, with her liver and low platelets...well let's just say it won't be easy. This might also completely exempt her from ever having a transplant because she won't be able to pass the pulmonary screening.

If it is liver it should improve once she is transplanted and she might get exemption points to move higher on the waiting list.

If it is both...well let's just say it would depend on exactly what is what.

So....very hard to hear but so glad they are now determined to figure this out. The UCLA doctor told her pulm he isn't going to stop until they know as much as they can. They may never know the cause or what is liver and what is congenital but at least they are going to try.

All tests will be done and transmitted to the tx team by NEXT FRIDAY when they meet on her transplant evaluation!! So we have a very busy week coming up. I just pray they find the cause and it won't preclude the liver transplant. Please pray they don't have to take her lung out. How we were hoping this wasn't going to be an issue! This is just horrible news. Fiona is very scared and so are we. This is just not going in the right direction...we are falling right now instead of moving towards a solution to her health problems. Hopefully there is a some safety net at the bottom of this fall................

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.