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If You Have CTEPH , Taking Adempas Because You Can Not Have The Operation, What Is Your Life Expectancy?

If You Have CTEPH , Taking Adempas Because You Can Not Have The Operation, What Is Your Life Expectancy?

posted January 25
A myPHteam Member

You know Edd I'm in the top of stage 3 pulmonary fibrosis and PH caused by the fibrosis. My only alternative is a bilateral lung transplant which I have chosen not to have. I was told in August of 2022 that my expectancy was no more then 7 years. That's what the doctors say. I believe that the good Lord will tell me when it's time to go home.

posted January 25
A myPHteam Member

I saw your question about life expectancy and wanted to add a little of my experience... I have been told I had less than a week left. That was 7+ years ago. I have been told I had a few months, about 5 years ago. I was told 2.9 years about 4 years ago. Today was a pretty good day.
I should add that I feel like I have a good team of doctors. UCSF and Stanford, good people.

I used to hear "live every day like it's your last" . Horrible advice. But I do try to speak my mind now, in case I can't tomorrow. But I feel it's counterproductive to expect life to end on a schedule. Have a great day.

posted January 30
A myPHteam Member

Only God knows that, is it Edd? You could ask your Dr about your prognosis?

posted January 25
A myPHteam Member

Love your reply willie

posted January 29

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