You will find many people here who understand that this is a terminal and degenerative illness. It’s not that we don’t talk about it, it’s that we consciously opt to talk about faith, surviving and living as well as possible given the circumstances.

I hope you can find peace of mind. And to answer your question about how long you have, live each day as if it is your last, because one day it will be.

Amen, I agree with you @A myPHteam Member. Well said. We need to enjoy and make the best of each and everyday. And be thankful for everyday God blesses us with!! 🙏 In 2022 I was in bad shape, but today I have come along ways and doing so much better Prayers and the right meds can give you some life back.

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A myPHtea...

I prefer to focus on the life that I want to have while dealing with this illness. My moto is One Day At A Time and enjoy the small things in life.

Well put Ken. More like focusing on LIVING WITH PH rather than DYING FROM PH.

The 4 medication pathways I described are ONLY for Group 1. Winrevair has not yet been approved for the other groups. In fact, I’m hoping to get into their clinical trial for Group 2.

And the other 3 pathway meds can be very dangerous for Groups 2 and 3. So in a way, you are very lucky because your grouping has a lot of medications that can help extend your life and improve your Quality of Life.

Some people think Winrevair may actually prove to be curative…It’s just not got a long enough history to be proven. And some people get nasty side effects from it…and others do beautifully.