In My Shoes: Saw GI today

Monday, December 22, 2008

Saw GI today

Fiona saw her regular liver doctor today. He asked about the second opinion appointment and we updated him that they basically want to start from square one. They want to verify her diagnosis, investigate ALL her physical problems and determine what is and what isn't liver related. We told him that they are thinking of doing some procedures, including a liver biopsy as well. He was listening intently and I told him we would do nothing without his OK. He smiled and said he had some concerns with what they want to do but once the MRI (yes, folks -- 6:30 AM Christmas EVE) will tell the center more about what needs to be done. He said he can't wait to talk to them. Of course, we are still waiting for the pulm appointment. He said that he thinks her diagnosis is correct and that the problems they see with all her arteries and veins are part of the diagnosis. He always said he likes that idea that they are starting over. Other eyes looking again might just be helpful. He was pleased and said he likes that he can work more directly with this team.

Fiona told him the clamp in her groin is still very painful and especially in cold weather or when she turns just right. WE waited for him to call interventional radiologist and they want an ultrasound done to be sure nothing is wrong. I'm not sure they are going to see anything. I think it is doing its job...clamping. I think it is pressing on a nerve or scar tissue has built up and it pulls. I don't know. But she is right, you can't even touch that area.

Otherwise, the family is home and we are ready for the holidays. Wishing each and everyone of you the best. 2009 WILL BE BETTER, gosh darn it!

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1 comment:

Anonymous said...: Christmas eve! OH for crying out loud! Well, I am with you.. 2009 is gonna be your year everything turns around.. only good from there on. We love you guys!!; December 22, 2008 at 5:21 PM

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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.