In My Shoes: I Need A HUG

Saturday, March 1, 2008

I Need A HUG

As Monday approaches we hope Fiona finally gets some answers to what is causing her shortness of breath and chest pains. She is presently wearing a heart monitor which she will wear for a month. She is recording at least one episode a day and right now the call center is saying everything is ok. That means that the beat is ok, just high(er) heart rate. That is what we have seen before. Monday will determine once and for all if she has pulmonary hypertension. This is what we absolutely don't want. If this test is negative then they will probably do a left heart cath to determine if there is a hole in the heart. So Monday will be very stressful. Fiona is very scared that this is going to hurt because she has to be awake to do the exercises during the cath. (This is an angiogram with her exercising by lifting IV bags as quickly as she can to raise the heart rate.) Keep her in the your thoughts and prayers.

On a great note, the new medicine for high ammonia is making a huge difference in her life. She is awake almost all day (of course naps are nice) and up and around now. She even went to Disneyland yesterday with Don. She rented an electric scooter and had a ball. She said she only had one episode and it wasn't bad! Thank you for DRUGS!!

1 comment:

Anonymous said...: Praying today for you Fi and Peg. Just praying that you will not have PH.; March 3, 2008 at 6:55 AM

Post a Comment

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.