In My Shoes: Good News

Wednesday, January 14, 2009

Good News

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Fiona was accepted today as disabled by Social Security. The stress of doing everything has been incredible and she is over the hump. WHEW! She even qualifies for Medical, however, in talking to the transplant coordinator, who became almost hysterical at this news, told her there is a problem using it. If she uses the Medical she has to completely change all medical doctors, the transplant listing would have to be redone, etc. Fiona assured the transplant coordinator her medical would not change and she would not be using the Medical.

The second transplant center has asked for more tests. They want another Cardiac echo bubble test (this is where, during an ultra sound of the heart, they put bubbles of air into the blood and watch how long it takes for them to go through the heart. If it goes through too quickly then the blood isn't staying in the lungs long enough to do the oxygen/CO2 exchange. That means the blood isn't oxygenated well enough to give all the cells in the body what they need.

The center also wants an macroaggregated albumin (corrected from first post since I missed it altogether and wrote something different...hate medical lingo) and I don't have a clue what that is other than it is a nuclear medicine test. I will have to do some surfing to figure that one out. Haven't had any luck as of yet. I really think they threw this test in to test my surfing skills! :)

Taking her to the doctor this afternoon. Either the kidney stone is really acting up or she has something else going on because she is getting really bad pains in her back. Hopefully it will be something simple!

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.