In My Shoes: Warning: Don't Pass Out!

Wednesday, September 16, 2009

Warning: Don't Pass Out!

Fiona saw the electrophysiologist (specialized heart doctor) and her QT rate isn't as prolonged. He really thinks the problem is from the malabsorption problems due to her liver disease and intestinal problems. He doesn't want to do anymore tests, especially the genetic ones because if they turn out positive it might preclude her from having a transplant. So, the prescription is simple: he is going to add a beta blocker to her pile of pills she takes daily and she is to continue the massive doses of potassium and magnesium -- with the warning: DO NOT PASS OUT! If she passes out for unknown reasons on the beta blocker then he will have to run all the electrophysiology tests and the discussion of an implanted defibrillator (pacemaker) will be seriously considered.

(see picture- not needed at this time) Right now he doesn't feel she is at risk for sudden death so we are now on a wait and see plan. She is avoiding all meds that could affect her heart, she will be taking the medications prescribed and we will see how she does once she has her transplant. More and more is resting on the success of the liver transplant. So good news! Things aren't perfect but much improved and she is out of immediate danger heartwise.

On transplant front: they are presenting her Friday and they are going to try to request exemption points hopefully getting her to a MELD of 30! (range 7-50) At this level she would get 10% or more added to her score every 3 months just for waiting at that level. So hopefully the committee will agree Friday to ask for these exemption points and that the national organization will agree! Fingers crossed and prayers being said. Again, we won't know anything for a least a month...but at least we finally found someone who is willing to help her and fight for her.

Peg
Doing the Happy Dance! (Hopefully our hopes won't be dashed!)

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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.