Re: Has anyone had problems with Pulminary Hypertension?

[Guest guest]

In a message dated 12/4/02 12:57:55 PM Eastern Standard Time,

dgblanchard@... writes:

> My daughter is 2.5 with CF and Down Syndrome

Hi Georgianna, remember me? who is now 9 and has cf and ds. She

also had a small space (is that ASD or VSD) and her heart rate was always

way too high. We were told she would have to have open heart surgery to

close this space, but we put it off and it finally closed on its own. Not

sure about the PH. Take care and keep us informed.

Sally

Springville, NY

Bri 14yo; 12yo carrier w/asthma; 9w/cf&ds

[Guest guest]

I am sorry that I can not offer any advice or information, but I

wanted to let you know that my thoughts are with you during this VERY

difficult time. These decissions are so stressful. Just remember

that whatever decission you make, it will be the right one. You will

do what you think is best, based on what information is available. I

hope that some amount of relief will come to you, once you have made

a decission.

Thinking of you and your family,

Gale

> 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

[Guest guest]

I am sorry that I can not offer any advice or information, but I

wanted to let you know that my thoughts are with you during this VERY

difficult time. These decissions are so stressful. Just remember

that whatever decission you make, it will be the right one. You will

do what you think is best, based on what information is available. I

hope that some amount of relief will come to you, once you have made

a decission.

Thinking of you and your family,

Gale

> 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