Has anyone had problems with Pulminary Hypertension?

[Guest guest]

My daughter is 2.5 with CF and Down Syndrome. She has a very small

VSD. She often has troubles with her o2 sats and many times her

lungs will still sound clear. She had a heart cath yesterday and we

were told that she has moderately severe pulminary hypertension

caused by both her bad lungs and her vsd. Normally with a vsd as

small as her's they wouldn't recommend doing anything about it but

because of the cf and ph they are leaning towards recommending open

heart surgery. The risks for this are pretty high for her. My

question is, does anyone else deal with PH with " just " cf? We don't

know if repairing her heart will in fact make the ph go away. I'm

trying to understand all of this and gather as much information as I

can so I can make the best decision for my little girl.

Thanks,

Georgianna