In My Shoes: Dancing in the Rain

Wednesday, January 14, 2009

Dancing in the Rain

A dear friend mentioned she really liked this quote I posted on C.L.A.S.S. forum. Thought I would share it with our friends and family here.

Life isn't waiting for the storm to pass
It's about learning to dance in the rain

I came across this quote and I think it says how we handle chronic liver disease. It is always there but we learn to enjoy our daughter in spite of the storm coming down on us. Some days the storm is light and we enjoy the day. Other says the storm is so strong we aren't sure we can endure it but when the sun breaks through the clouds, even for a little while, it feels so good we can put aside the storm for a few minutes and smile, knowing we are truly blessed.

Things are good right now. Going to social security today for the final stages of getting Fiona disability. Haven't heard from the second opinion transplant center on if we need another appointment or if they are just going to send Fiona paperwork. Fiona will call next week if we don't hear anything this week.

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.