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

A myPHteam Member asked a question 💭
Simpsonville, SC
January 25, 2023
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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.

January 25, 2023
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.

January 30, 2023
A myPHteam Member

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

January 25, 2023
A myPHteam Member

For individuals with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) who cannot undergo surgery and are treated with Adempas (riociguat), the life expectancy can vary. If CTEPH is not treated and continues to progress, the life expectancy is typically one to three years. However, treatments like Adempas can help Show Full Answer

For individuals with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) who cannot undergo surgery and are treated with Adempas (riociguat), the life expectancy can vary. If CTEPH is not treated and continues to progress, the life expectancy is typically one to three years. However, treatments like Adempas can help manage symptoms and potentially improve quality of life. It's important to discuss individual prognosis with a healthcare provider.

- Life Expectancy Without Treatment: 1 to 3 years
- Treatment with Adempas: Can help manage symptoms and improve quality of life

For more personalized information, consulting with a healthcare provider is essential.

July 18, 2024
A myPHteam Member

Love your reply willie

January 29, 2023

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