Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

To learn more about PH visit www.phaware.global. phaware® is a 501(c)3 organization. © Copyright 2015. All Rights Reserved.

Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bayer Healthcare & Reata Pharmaceuticals.

Jas James Transcript

May 23, 2017

Jas James is a pulmonary hypertension patient and long-term survivor from Canada. She discusses the moment she realized there was something more than pneumonia that was causing her breathlessness.

My name is Jasveer James from Cobble Hill, B.C.                 

I was really active. I could pitch five games of ball in a row, I played ice hockey, I snow skied. One day I went for a walk with a friend ten years older than me. I was really short of breath, so I went to the emergency room and they thought I might have a clot, but I didn't. They diagnosed me with pneumonia. I don't think I had pneumonia because I didn't have a fever or anything but I heard them say the word, "You have an enlarged pulmonary artery on the x-ray." I worked as a practical nurse.

So when I went to the rheumatologist, I got there and I told him that had happened, and that I had a hard time walking up the ferry stairs to take from the Island to Vancouver, and I was really short of breath. They asked if a student could come in on my check up, doing a fellowship, and he felt the side of my neck and said, "You need an echo before you fall through the cracks."

Well, I had the echocardiogram, like he suggested, and I went to the... we don't call them pulmonologists [in Canada]... respirologist, and he said I had pulmonary hypertension and I needed to see somebody in Vancouver because he really doesn't see people like me. I found out, I had a pulmonary artery pressure of 114, and an enlarged heart. I have lupus, too, so that's why I was at the rheumatologist.

I had the echocardiogram 15 years ago coming this August, and October 17th I had my right heart cath to confirm it. I'm doing okay, you know, I'm limited to certain things, but I just feel good to be here.

Just the other day a lady was having shortness of breath, and I told her, "Maybe you should get this checked, and this checked." Unfortunately she got a worse rare disease than me, a lung disease called Lam. So, awareness is really good, and the more people that know about it and the earlier the diagnosis the better your outcome's going to be.

I did end up with autoimmune hepatitis, five years ago, and even then they were saying, "This might happen, or this might happen", but it's been five years now and I'm still doing okay.

I'm Jas James and I'm aware that I'm rare. 

Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitterinstragram, youtube & linkedin #phaware