In My Shoes: Swine Flu Confirmed

Monday, October 19, 2009

Swine Flu Confirmed

It is confirmed that Fiona did indeed have swine flu. Oh well, she is better and that is what counts.

The appointment at the transplant center was interesting. It started off really upsetting, with seeing yet another new doctor that hasn't seen her before. The tests had not been reviewed or seen by the doctor and he was just not impressed with her presentation. Yes folks, back to the whole you don't need a transplant, let's take out your spleen, maybe do some artery bypasses.......um..................So Fiona told him that all her new tests were sent over and he left the room to go see them. While he was gone we could hear them talking about her...couldn't hear exactly what they were saying. THEN, yes, THEN the doctor who saw her last time and wants her transplanted sooner than later, walked into the room and the whole appointment changed. Yes, they are asking for exemption points. They are going to ask for her MELD (rating points) to start at 18. This puts her in the area of being offered an organ, though on the low end. Secondly, this surgeon has the whole surgery planned out. He is going to do it in stages. The first surgery will be the transplant of the liver. Then 3-7 days later he is going to work on her bowels, taking out all the scar tissue and being sure everything is working and where it should be.

It was funny, the first doctor totally changed his mind on her treatment plan while standing with "her" surgeon. The transplant coordinator was all in agreement. Amazing how one doctor/surgeon is making such a difference while the rest of the team is just clueless. Thank goodness we have this guy on her side/team otherwise they would have taken her off the list this summer.

Expecting to hear her actual MELD score from UNOS (the US organization that oversees organ transplants) in about a month.

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.