In My Shoes: Update on What is Going on

Wednesday, March 4, 2009

Update on What is Going on

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Just to let everyone know what is going on. Been a busy week already but I think we are making progress again.

**Liver Biopsy is ON

**Fiona WILL participate in the experimental drug ELTROMBOPAG study. This drug raises platelet levels to normal while you are taking the drug. This is much higher than she would be able to get if given blood products. The higher her platelet level for more safe the liver biopsy will be.

**Waiting for liver biopsy to be scheduled and as soon as it is scheduled the study drug can be started. She will be on the study drug for 5 weeks before the biopsy. Then the drug will be stopped and she will be followed for 4 more weeks.

**Cedars is working with me on appointment times. We will be able to come in as late as 4 so I don't have to take time off from work. This was one stumbling block that has been removed.

**Fiona will go in for a screening interview to see if she qualifies for the study drug. In this study not only are they looking at the drug side effects and benefits BUT they are doing DNA testing which may be interesting.

**Fiona may not qualify for the study since we have hereditary cataracts in the family and she already has kidney problems. Cataracts and kidney failure are 2 of the serious side effects found in animal studies but not seen YET in human trials. This is our main concern about participating in this drug study. Fiona has enough problems without getting something else to deal with on top of it because of a med.

**There is a 50-50 chance she will get the drug or a placebo in this study. This study is still at double blind stage. She may still need to be blood products before the biopsy if she gets a placebo. They will know within the first week if she is getting the drug or a placebo.

**On more immediate news, Fiona was in ER Monday night for severe abdominal pain. Her liver doctor thought she may have had an abdominal hernia but the CT showed nothing. So we don't know what is going on other than her abdomen hurts like heck, in fact, to the point you can't touch it. It is right at the area where her major scar is and where a lot of bowel surgeries were. Maybe adhesions? So more pain killers.

**For exciting news, Fiona will be turning 21 on the 14th. It is hard to believe. I know moms always say that but with everything going on it is hard to believe how much time has past.

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.