In My Shoes: To Be Continued......

Monday, December 29, 2008

To Be Continued......

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Fiona's appointment went well today. LONG LONG LONG. Guess this center does clinics where it is first come first served. We got there and, first of all, the receptionist once again told us we didn't have an appointment. GEEZ, this lady needs to find another job! After convincing her to check us in, calling the tx coordinator to report the problem, we waited for 3 HOURS to be seen!

The pulmonology team was very nice and very concerned. Unfortunately, Liver Team kept all her labs and films and tests so they didn't have anything to go from. Luckily my SMART Darling daughter has a bag that she keeps all the liver stuff in and she remembered to take it with us today. In there was all the paperwork that was sent to the first center(including--a baggie of bloody tissues to show them what we mean by coughing up blood. Seeing is believing). We didn't have any films but at least they got something to look at today. Basically, Fiona needs to come back the end of January once they have had time to look at everything, determine if they need anything else and then talk to her pulmonologist, which they said was ONE OF THE BEST!!!!! That was really nice to hear. So we wait again. This is not a bad thing. People are listening and wanting to help. We have waited for years, another month or so won't hurt at all.

What was the nicest thing to hear was they agree that this isn't a way to live for Fiona. They also agree her lungs bleeding is just a disaster waiting to happen. So they are going to try to come up with at least a treatment. They are also going to see if they can figure out if this is liver related or not. Anything will help. So waiting for the next phase.

Happy New Year's to all our family and friends. We have a amazing group of people in our lives and each and every one of you are very special to us. Thank you for being there for us. You make this journey more bearable. Thank you!

Peg

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1 comment:

Anonymous said...: well... the 3 hours wait thing sucks! I would say video games, but I am afraid my advice is a tad bit 6 year old boy-ish. I am glad you got in.. I am still praying, still full of hope. This 2009 is going to be great. I just know it.; December 30, 2008 at 5:04 AM

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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.