In My Shoes: Just keep on rollin'

Tuesday, April 22, 2008

Just keep on rollin'

First off I would reallly like to thank everyone for their support. I would like to say thank you to thoes who offered to visit me while I was in the hospital it's very comforting know that you have people around you who care.

it's been hard these last few days and I'm just trying to soak it all in. We got some news that yea I had another bleed due to an AVM in my lung but they couldn't do anything because they felt that the risk of doing another embolization was far greater than the benefit. It turns out the part of the blood flow in my lung is going the wrong way and they didn't want to do a procedure that would risk me being parylized in either my leg or body. it's hard trying to stand here knowing that you're only getting worse and you're only going to get worse before anything starts to get better. The last few days I just feel so drained and all I've pretty much been able to do is sleep. I'm so frustrated but at least the doctors believe me and are trying everything they can to help and now I have been officially sent the transplant resource area where they decide what test you need before you go to UCLA and what need to be done. The doctors have said that they expect that I will go back to UCLA by June and if UCLA does not accept then I have been advised that I need to go somewhere else.

Thank you again for all your support and concern. I hope I can get better soon.

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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.