In My Shoes: The Stress Begins

Monday, April 28, 2008

The Stress Begins

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Today:
Step 1: Met with our insurance transplant coordinator and social worker. Things have really changed over the last two years, some for the good and some not so much so. This is the first step besides waiting on the rest of the new medical tests needed. No test can be older than 6 months so a lot to redo. It will take about 2 months to get all this info together and then get approval to go to UCLA. Then it will take another month to get an appointment, so right now we are looking at probably end of July or August at the earliest.

Step 2: Learn to breath through this stress. This opened up all the past frustrations and disappointments. Hate this process. It is so cold and impersonal. We just keep telling each other one day at a time, one day at a time.

Step 3: The insurance now includes housing and food allowance while Fiona is in the hospital. They will even pay for transportation if we need to go to another center out of state. The insurance has, however, decertified some of the other centers in our area so that really limits some options. They are now telling people to fund raise which is opposite from what they said in the past. So another thing to worry about.

Step 4: They want me to promise I will take 3 months off of work when she gets her transplant. I told them today is today, we will see which of us of the family will do what when the time comes. Gees, these people are want blood before we even know what is going to happen. When the time comes I will take off what I can and then the other family members will have to pull their weight.

Step 5: Just going through this process is so nerve wracking especially since we haven't had good luck before and espeically since she has all these lung issues. It really puts the bar very high. Hopefully someone will let her stand on their shoulders so she can reach it.

Step 6: Have I mentioned I HATE THIS????? The world of transplant is so hard and even that much harder as an adult. If there were enough organs things would be easy but since livers, especially, are in extreme shortage it is just a terrible process of elimination - not qualification. Please pray Fiona makes it this time. She can't continue on the path she is on. It is really taking a toll on her body and spirit.

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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.