I’m Aware That I’m Rare: Terry Jones (285)

The phaware® interview

PH Patient, Terry Jones on being a patient and caregiver and why research is important for the pulmonary hypertension community.

I’m Terry Jones and I’m a pulmonary hypertension patient.

I started having breathing problems when I was working back around 1998, and I got diagnosed in 2009, by a right heart catheterization. When I was first diagnosed, I started on a low dose of oral medication and it didn’t appear to be working. But then after about two months, my wife said to me, “Terry, what are you doing? You went out to the kitchen for your coffee without your oxygen.” That was the first time that I noticed that, wow, geez, this medication really is starting to work.

The limitations of what I can do have been gradually increasing. You get to realize what your limitations are and you have to kind of live from there on with the new limitations being your new normal type of a thing.

Originally my wife was taking care of me and then she had a stroke and once she was sick, I ended up being…