The PHight or Flight Project: How The Voice of One Pulmonary Hypertension Patient is Inspiring Others

by Serena Lawrence

In October of 2013 I started to notice that I had some shortness of breath. At first, I just assumed it was seasonal asthma. As the month progressed my symptoms began to escalate at an alarming right. My parents have two large staircases in their home. I had never had trouble going up several flights of stairs, but suddenly I could barely do one. I had a difficult time walking up hills, and could no longer walk to my bus stop after work without feeling like I was going to pass out. I started going to my family doctor and to the ER regularly. However, because I was only 25 and lived an active and healthy lifestyle my symptoms were overlooked. Because I looked healthy my symptoms were over looked, even when they hooked me up to an oximeter and my oxygen saturation was below 90%- which is not normal for someone my age.

I was officially diagnosed with stage 3-4 Idiopathic Pulmonary Hypertension in December 2013. It takes most people 2 years to receive a diagnosis of PH because it is considered an “invisible” illness. Needless to say, I was so sick I wouldn’t have made it another two years without a diagnosis. Although PH is a progressive disease, my symptoms developed and progressed uncharacteristically fast in just a few months. At the start of October I was walking a few minutes each day, and doing boot camp exercises. By the time I was diagnosed I was completely bed ridden, in severe right-sided heart failure, required 24/7 oxygen, and could no longer dress myself or shower.

After the diagnosis I made the rookie mistake of Googling Pulmonary Hypertension. If you haven’t Googled PH, let me tell you, its bad. It confirmed the original prognosis I was given. However, I was determined to find hope. I eventually started connecting to other young adults who have gone on to work full-time, or adopt families after diagnosis. I have also spoken to long term survivors, some of had PH for well over 40 years and are still playing golf! I thought to myself “why aren’t these stories more available? This is what newly diagnosis patients need to see!” After that thought came the creation of The PHight or Flight Project.

On The PHight or Flight Project there is a segment called “PHighter Friday” where exceptional patients of all abilities share about themselves to help provide hope to newly diagnosed people with PH. I have had the pleasure to share the stories of people who are able to participate in marathons, someone who is an opera singer after receiving two double lung transplants, and another person who runs a blog about living on o2 for life and has had PH for over 20 years. I also write about my experience as a young adult with PH, and freelance write for other website to help raise awareness and advocacy for people with PH. I wanted to create a safe space for PH patients, and hope that The PHight or Flight Project can show what is possible for people after diagnosis.

Learn more about the project here.