School is going ok. I'm passing everything so I'm fine with that, I don't have to have A's, like some people.
Bella is wonderful, she is a joy to be around most of the time, just kinda cranky when she's tired.
Here is the latest on Joe'l:
Most of you know, she has Pulmonary Hypertension, also called Pulmonary Artery Hypertension. She has the congenital form, she was just born with it. The problem, as I understand it, is that the Pulmonary artery that goes from the heart to the lungs is not dialating the way it is supposed to. In order for her body to get the oxygen it needs, the right side of her heart has to pump extra hard to get enough blood through to her lungs. Imagine trying to fill a barrel with a garden hose that has a 4" piece of pipe taking the water out of the bottom. The pressure in the garden hose would have to be ENORMOUS to get the same volume of water.
She has had a perfusion scan, this involves inhaling a radio-active mist, then laying in a large radio-activity detector (basically) it shows how the mist is transferring to her blood from her lungs. This test was fine, also her pulmonary function tests were fine (how well her lungs expand and exchange O2 and CO2, pressures and the like). She had a high resolution CT scan of her lungs and blood tests to rule out blood clots. After all this she had a heart catheterization. This consists of threading a small tube from the femoral artery (in the groin area) up to the heart. Once there the surgeon can deploy a variety of devices through the tube to do a bunch of different things. In Joe'ls case they took some samples of tissue in the area and pressure readings. They also injected some Calcium Channel Blocker drugs into her while taking pressure readings to see if these would help bring her pressure down. CCB's are used in treatment of the more common peripheral hyptertension (High Blood Pressure). These drugs did very little to help her.
After searching on the internet I found a clinic in Louisville, which is about as far away from us as Bloomington is, but has much larger hospitals and more specialty doctors. We have had two appointments at Kentuckiana Pulmonary Associates with Dr. McConnell. After the first appointment he prescribed Norvasc, a CCB for Joe'l. She had very minimal improvement with this drug, and after a couple of weeks she was feeling the same as she was before taking it. We had another apointment and the doctor has put her on a drug called Tracleer. It is a known tetragenic, which means it causes major birth-defects. It is also very hard on the liver. She has to have monthly pregnancy tests, be on two forms of birth control (and not the pill, as the two drugs don't get along well) and have monthly liver enzyme tests to see how the drug is affecting her liver. It is the lesser of the evils involved.
The doctor also wants her to lose some weight, but she can't exercise because of the strain it will put on her already strained heart. So we are both eating smaller, healthier meals.
Any way we look at it, there is a rough road ahead for our little family.
Sunday, November 18, 2007
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