I have gratitude and hope as I celebrate my 22nd year with PAH
This is Jas James’ story:
I was diagnosed with severe pulmonary arterial hypertension (PAH) at 42. At the time, I had no idea what PAH was.
Before my diagnosis, I was being treated for lupus and saw a rheumatologist regularly. At one of my visits, I explained that I had an X-ray showing an enlarged artery. I also told the doctor I was noticeably short of breath, which was unusual since I used to be so active. The medical student in the room felt the pulse on my neck and told me I needed an echocardiogram before I “fell through the cracks.” My pulmonary artery pressure was 110 mmHg on the echo, which is considered extremely high.
The local respirologist put me on overnight oxygen and referred me to a PH specialist in Vancouver, British Columbia, in Canada. I was admitted to Vancouver General Hospital on Oct. 16, 2001. I had multiple tests over the next week, including a right heart catheterization, which revealed severe PAH. A spot on my liver was found, so I had a biopsy that showed liver fibrosis. I was then taken off a medication called methotrexate which I had been taking for lupus.
I was pretty devastated. It was a scary time for me and my husband, Rick. We had two young daughters, who were 14 and 7 years old at the time.
Few medications for PH were available then. I decided to see if my liver enzymes would come down so I could try Tracleer (bosentan). They slowly came down, and in June 2002, I would start Tracleer with close monitoring. I would also add sildenafil in 2006. I had to discontinue Tracleer in 2011 but remain stable on sildenafil today. My pulmonary artery pressure is normal with treatment.
It’s mind-boggling to me that I have been living with PH for 22 years. My husband has been my biggest support on this journey. We’ve had many milestones, including seeing both our daughters marry. I also reached my ultimate goal: I have a granddaughter who is the light of my life.
I receive phenomenal care at my PH clinic and from other doctors and specialists. I have been fortunate to have supportive friends. This disease has connected me with so many people I otherwise would not have known.
Many things in the world of PH have evolved. I’ve been fortunate to attend conferences in Canada and the U.S. My life is not what it was before PH, but there is a lot of hope and I have so much I am thankful for.
In recognition of Pulmonary Hypertension Awareness Month in November, the PHCommunity Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by PH, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #PHSpotlight, or read the full series.