In My Shoes: Waiting and Waiting and Waiting

Wednesday, March 11, 2009

Waiting and Waiting and Waiting

The intact appointment went well and all our questions were answered. It seems that since Fiona is going to have the liver biopsy at a different hospital than the hospital where the study is being done complicates matters some. It looks like, so far, it is a go. She passed initial screening but the doctors will review the labs and EKG from today to make final determination. Then she has to wait for the exact date of the biopsy before she can start taking the medicine. This must all occur within 30 days or they have to contact the head study people and get permission? I don't know. We sat through a good hour of explanation and our heads were spinning by the time they even started drawing blood. So....we wait. Fiona's TX coordinator had left a message on her phone today saying that it looks like the biopsy will be mid-April but we don't' have an exact date.

The only thing that showed up on this intact that was a little of the ordinary was on her EKG she had a prolonged QT interval and conduction time. She had sinus rhythm which is good. Don't know what this mean. It wasn't bad enough to kick her out of the study since this drug hasn't affected any one's heart.

It eased out minds some that this drug is already being used to a certain kind of platelet disorder already. This study is just to broaden the conditions it can be used for. They are going to monitor her on a weekly basis for at least the next 9 weeks. Hopefully it will be beneficial and hopefully she gets the actual drug and not the placebo. If she gets the placebo she will still need to be followed for 9 weeks....argh.

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.