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

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.

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.

Hi Cami. PH, including PAH, is not staged. It is divided into functional classes, 1 through 4, and that just signifies how symptomatic a patient is at rest, etc. I am Group 2, Class 3. I am assuming then that you are Group 1, Class 3.

Hopefully you are on triple or even quadruple pathway medications for your PAH and will be able to stave off the final progression of the PAH for a long time to come.

PAH has several specific medications that can help you, including Winrevair which is the 4th pathway medication. It’s a real game changer for those patients that can handle it.

And while we all do know we are dealing with a progressive and yes, terminal, illness…our lives can generally be significantly extended with the expertise of a true and proper PH care team.

Thank you Heather! That is very encouraging. I am not sure if that medication is effective for GROUP 1 candidates I will research it and discuss it with my care team.