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[Guest guest]

,

I'm here but none of the phone numbers work! Please keep calling. I

can't access the board or my own e-mail consistently right now and my

Aunt has dial up and only one line so my access is limited. Send a

phone # to scwfraser@.... or keep calling. Can't wait to talk with

you.

Kathie

>

> Hello

> I have pulmonary hypertension. I found out in April 06. A heart

catherization confirmed this diagnosis. At first I was given

Trakleer. Strong medecine but after a while (6 months), the doctors

decided that it was not helping. I was then put on Revatio, which

is viagara. No side effects but also, after 9 months, no

improvements. I no longer take it. Because of the advanced stage of

my IPF and PH, I do not take anything for it. When my heart rate

accelerates and pounds so hard, then I take oxycontin, the kind that

immediately absorbs into your tissues. You dont have to swallow it or

anything. Right away it opens up air passages and begins to help me.

The only thing I can do now is to go slowly, pay close attention to

my breathing and monitor my pulse closely. I am sorry I cannot offer

you better results from any of my treatments.

> L

> NIPF 02 PH 06 Transtracheal delivery system 07

> pulmonary hypertension

>

>

> My wife and I are truly surprised by the lack of response on this

> forum to our inquiry regarding pulmonary hypertension. Clinical

> studies for treating IPF have shown a high percentage of IPF patients

> also have pulmonary hypertension (PAH). In fact, several studies have

> shown that percentage to be greater 50% yet we only had two members

> reply. PAH in IPF can be deadly unless properly treated. That is one

> reason why some of the current treatments for PAH are also being used

> with the hope the drug will somehow slow down the progression of the

> IPF as well.

>

> I'll try rephrasing my question. Could those of you on the forum who

> know you have pulmonary hypertension please tell me when you found

out

> you had PAH, what type of treatment are you receiving for it and has

> the treatment been shown to reduce your PAH?

>

> Mike

>