In My Shoes: 23 Vials of Blood

Monday, May 12, 2008

23 Vials of Blood

After a very long day and a marathon race between appointments, Fiona finished almost all the testing needed. All she needs now is a 24 hour UA and dental clearance. The lab was having a bad day and after waiting 40 minutes to just check her in, figure out what to do and what not to do and how to send the results to the right place, we gave up and went the ultrasound. Coming back after the ultrasound and the urology appointment to still very confused lab techs who were putting specimens in the wrong place Fiona and I left wondering if things were done correctly (and 23 large vials of blood later). So a quick trip to the TX coordinator alerted her to a possible problem and she said she would take care of it. ON THE GOOD NEWS FRONT, Fiona's bone density has improved! WOO HOO The low bone density is only in her hips now and that area has shown a .2 improvement. Her spine was at the low normal range but normal no less. Thank you doctors and good meds.

Peggy

P.S. Fiona's liver doctor arranged for the ultrasound of her legs today and while she was on the table came down personally to add an ultrasound of her kidneys. He is the most awesome doctor. We couldn't ask for anyone better.

PSS: Labs are coming in already. Fiona's ammonia is high even on medication 2 times a day. She is right she is having mental clarity problems! Also total protein, albumin are low and bili is on the rise, though not very much. Kidney functions are normal and the other liver panel tests are normal so far. So this is a good indication that the liver is slowly going. The labs are starting to catch up with the symptoms.

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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.