Tuesday, June 9, 2009

Cath #3

Elise's cardiac cath results were not what we were hoping for at all today. She was tested on room air (21%) after skipping a dose of sildenafil and nifedipine. Her pulmonary pressures were as high as they were last August before starting Flolan. The pressure in her lungs were higher than her systemic pressures. Because she has a hole between her atria (PFO) she is shunting a significant amount of blood away from her lungs. That means that blood is bypassing her lungs and therefore not being oxygenated. What doesn't quite add up is that she had a really good night, last night, without oxygen. We can't underestimate what the new drug regimen might be doing, but it definitely isn't enough. So we are going to increase the doses of sildenafil and nifedipine radidly this week up to the point that her blood pressure can tolerate. We will then repeat an echocardiogram to see how much blood is passing through the hole between her atria. It's not entirely sensitive for detecting high pulmonary pressures, but will hopefully be a useful indicator. If we are still shunting blood away from the lungs after maxing out these two medicines, we can add a third oral drug, bosentan. Hopefully, that will get us by for a few months when we will get another cardiac cath. If her pressure remain high at that time, we will have to go back on Flolan. So the good news is we have options, and we know that Flolan is effective if we have to go that route. This is all just very frustrating, tiring, and depressing for us. We really hope to have something figured out before moving to Florida. Jason

2 comments:

Anonymous said...

I'm so sorry that you got such disappointing news. Remember, if God leads you to it, then God will lead you through it. I will pray for you all and if there is anything else I can do, let me know. Thanks for the update.

Kari

Anonymous said...

Thanks for the report. Sorry it is not better news. Just know we are all thinking about you and praying for the best. Love you a bunch and hoping to see you all soon. Lots of love,
Grandma Mary