In My Shoes: YES! YES! YES!

Tuesday, September 15, 2009

YES! YES! YES!

Fiona got an email today for the transplant center surgeon. He has reviewed the medical information and file plus spoken with her liver doctor. They both agree she needs a transplant sooner than later. So Friday, the surgeon is going to represent her to the transplant committee at the transplant center and ask for exemption points to get her higher on the list. Fiona's case will then be sent to the national organization and they will have to review her case and see if they will grant her the exemption points. If all goes well, she should hear in the next month or so, if these points will be allotted to her. Then, if all goes well, they are hoping she will get a transplant in the next 6 months to a year! It is just too hard to wrap our minds around this right now, but someone agrees she is much sicker than the point systems indicates. We are witnessing a miracle right before our eyes....we hope!

Of course, in working through this process and talking her to liver doctor and transplant coordinator, they kept asking her if she is ready for this. Asking does she understand 5% of the patients don't make it through the surgery, telling her she could die. Fiona said she understood but at some point decisions have to be made and her life quality is so diminished that she has to do something to improve her life. (Very hard conversation to have for someone so young! Thank you FRIEND for helping her through that rough conversation.)

There was discussion about her intestinal issues and the surgeon believes Fiona has very little intestine left. Not sure how he determined that. I know she has had a lot of intestinal surgeries but wasn't aware that the surgeon took out that much....so this may be a premature diagnosis. But at this point they are not considering intestinal transplant as well.

Praying this all comes to pass and that we can see light at the end of the tunnel. She has been very strong through all of this process and I am very proud of her, just so sorry she even has to go through it. So keep your fingers crossed that the people who have the power will see how much she needs a new liver!

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.