In My Shoes: Miracles Do Happen

Monday, August 10, 2009

Miracles Do Happen

There is a truckload of nuts on the way!

The appointment with the transplant center went really well today. Fiona saw one of the top surgeons and he was very interested in her case. (He was dragged in on the case because he wasn't suppose to see her today.) He said they had been ready to say she was too early for transplant but after hearing all of the problems she was having he thinks she needs a transplant sooner than later. He will order some tests and look over those that were just done. He examined her and explained that some of the strange red marks she is getting are from liver disease. He agrees no one really knows what is going on inside her but he said HE will find answers and let her know.

He said the Kasai, the liver bypass, was meant only to last a couple years. Only about 10% get more than that. Fiona had gotten 21 years and he said he has seen people in their 30s with the Kasai, however, in the end they need a transplant. He agrees that even if her lung problems aren't liver related, a new liver would make that problem less of a problem (but he thinks they are liver related.) He also said there is no reason to let things get any worse. She doesn't need a bowel transplant or lung transplant on top of all of this. She just needs a liver and soon.

HE GOT IT!! She is unusual and she just isn't textbook. He said there are some loopholes no one has thought of before he is going to use. UM....her being on TPN for the first 18 months of life. It causes liver damage. Also her atresias -- bowel, gallbladder, liver.

We were telling him that Fiona is having a lot of bowel issues now. He said NO ONE is suppose to do surgery on her now unless they are going to give her transplant at the same time. Her liver will not withstand much more. So the solution: give her a transplant. AND.................we said we might have a living donor but we don't want to do that if we didn't have to. He said we wouldn't have to! YAY

All I can say......and I must admit I'm speechless....I know, I know it is rare...is AMEN! Miracles do Happen! Thank you, thank you, thank you.

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.