CTEPH patient, Pam Kehoe is a member of the CTEPH Advisory Board (www.CTEPH.com) She discusses her diagnosis and how it was confirmed only after receiving a V/Q (ventilation/perfusion) scan.
I'm Pam Kehoe and I'm from Wisconsin.
My PH story is I had not felt well for a long time and my story probably begins 20 years ago with a blood clot, possibly in my leg, which went undiagnosed, untreated. That was probably my first incident of a DVT, or a pulmonary embolism.
In December of 2013, I didn't feel well at all after being very active for the day, and felt like I was going to pass out. I went to the emergency room, they diagnosed that I had a blood clot on my lungs. I was in the hospital for seven days. They treated it with blood thinners and sent me home, and said that that blood clot would just dissolve and I would feel better.
I didn't feel better, I actually felt worse and continued to decline health wise. I really thought I was just going to die. I couldn't breath, I couldn't walk, I couldn't go long distances. I just couldn't function physically.
My sister-in-law visited and said, "You can't give up. You've got to get to the right doctor." I saw a doctor at a major city near where I live and even before she saw me, she ran a battery of tests including a V/Q scan, which diagnosed CTEPH, or blood clots which lose their blood flow and become scar tissue, and accumulate on the lungs.
In essence, that shut my heart down so I had an enlarged heart. I was diagnosed in September of 2014 and in February of 2015, I went to UCSD in California and had PTE surgery where they removed those blood clots on my lungs. Much like open heart surgery, only they clean out your lungs instead of your heart. Six months later I was off of oxygen. My heart was back to normal size and I'm doing really well. No medications, no oxygen.
That surgery and that doctor's a life-saver. I can breath and I no longer think twice about walking through the ball fields to a softball game. I can go the distance. I'm a little slow at times but I can go the distance. It's made a huge difference.
It was a life-saving surgery and knowing that pulmonary hypertension patients are also one out of every five could possibly have CTEPH, and without that V/Q scan you won't know. Until you have that V/Q scan, there's a hope out there, there's a chance, there is life-saving surgery.
I'm Pam Kehoe and I'm aware that I’m rare!