In My Shoes: OH MY They Presented Her

Monday, August 4, 2008

OH MY They Presented Her

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Well shock of all shocks! Fiona got a call today from UCLA and they went ahead and presented her case last Friday because the UCLA pulmonologist wanted to discuss her case. They have ordered MORE pulmonary tests and want all the ones done to be redone. UM...........not sure what is up but at least I think we have someone on our side. Anyways, they will represent her as soon as they get all the test results. Of course, her tx coordinator isn't in today and her pulm went on vacation.

Fiona just did her 6 minute walk pulmonary test today and her SPO2 [SpO2 also known as SaO2 (saturation of oxygen in arterial blood flow), is the percentage of oxygen saturation in blood] was down since April. It was 95% in April and 90% today. So something is progressing. On her Cardiopulmonary exercise test(that is where they cathed the heart and had her exercise) her SPO2 at rest was 95% and during exercise was 89%.

Funny Non-Fiona Story: Fiona's kitty has had ear infection problems for years and has been seen multiple times for the problem. Well in June, her dear kitty woke up one morning with her ear the size of a golf ball, so we rushed her to the emergency vet and she needed emergency surgery for a hematoma. With the ear sutured to a plastic board and her in an e-collar for 4 weeks, it healed nicely. Got the plastic board off the ear and the collar taken off to have her immediately re-injure the ear. So back to surgery and more time with the e-collar on (and $2000 in bills). Then she got the all clear and we gave her a bath and made her all pretty. She seemed to be leaving the ear alone so we thought we were clear. But this was not to be. One day later she had begun to scratch the ear again so the collar went back on. Needless to say she was not happy at all. She couldn't clean herself though she spent hours licking the inside of the collar. Taking pity on the kitty, we bound her foot and took the collar off. The claws are what is causing all the injury. So she took off the foot bindings twice and started scratching. The ear substained some minor injury but not enough to take her in. So I rebound the foot and TAPED it directly to her foot. NOW our drama kitty has a whole routine that is just so funny. When you are looking at her or petting her she holds the leg out to the side and meows and meows. You touch her foot and she just cries. HOWEVER, when you aren't looking and paying attention to her she walks just fine, runs around and goes in and out of the cat door with no problems. She has a wonderful routine and it is just hysterical. Now not only is she OCD but now a drama queen.

Peggy

1 comment:

Laurie Johansen said...: Yeah, I am so glad they present Fiona to UCLA. It sounds like at least one person knows she is in serious need of a new liver!

And OMG, your kitty story is hilarous. Being a kitty person too, I had no problem picturing your little drama queen OCDer!

Love Ya,

Laurie; August 4, 2008 at 4:38 PM

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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.