Jas's Story

I was diagnosed with PH in August 2001 at the age of 42. I had been short of breath for quite sometime. I was told it was probably that I was taking a long time to get over the pneumonia I had. I was also told by the disability company that I might benefit from some form of physical conditioning to increase my physical tolerance. It was suggested that I might benefit from some goal orientated counseling. I actually had been off work due to lupus for a while and was trying to do a gradual return to work. I was struggling at work just making a bed.

One day I ended up in emergency very short of breath and very low oxygen level. It was in the 50’s.Once again I was told it was pneumonia. I was having a lot of pain, I explained to them it was like pleurisy which I had in the past after a bronchoscope. They did blood gases and X-rays , gave me oxygen and pain medication . They said the X-ray showed an enlarged artery. I was going to be admitted to the ward. I asked if I could go home. The respirologist said only when my oxygen levels came up. After quite a few hours my oxygen levels came up and I was able to go home and was put on antibiotics.

Since being diagnosed with Lupus in 1984, I see a rheumatologist on a regular basis. There was a student there that day and I was asked if he could also come in for my check-up. I told them about my visit to emergency and told them the X-ray showed an enlarged artery. I also told them how hard it was for me to walk up the flight of stairs on the ferry. All my life I had been a very active person and involved in sports, working full time and raising a family, now it was difficult to walk up stairs. The student felt the pulse on my neck and said I needed and echo before I fell through the cracks. He seemed very concerned. So my rheumatologist sent a letter to the respirologist.

My respirologist, which had seen me in emergency, ordered an echo. I went for a follow-up and that is when I was told I had pulmonary hypertension. He seemed quite serious as well .He said the pulmonary artery pressure on echo was 110. I was put on calcium channel blockers . I also had some oxygen testing and was put on oxygen at night. He said I would be seeing a specialist in Vancouver and would get a call.

I went home and looked up pulmonary hypertension and found the PHA website. I showed my husband and said, “I don’t have that kind of pulmonary hypertension.” I told him I probably have secondary pulmonary hypertension, which is probably not serious. That’s about how much I knew about pulmonary hypertension then. I also had a follow-up with my Doctor and asked him if I was going to die. He said yes you could, but we will deal with it the same way as we have with the lupus. My doctors have been very supportive with me since they had been treating me. They have always believed me when I would say something is not right.

I got a call on October 15, 2001 to go to Vancouver General for tests. I went over the next morning. That is where I met my pulmonary hypertension specialist. I had a lot of tests. I was quite happy that there was an oral medication now available for pulmonary hypertension. I had an ultra sound of my liver and was told that I would be having a liver biopsy. I found out I had liver fibrosis, which was probably caused by a medication called methotrexate. I was on this medication for lupus. That meant tracleer wasn’t and option right now.

I was pretty devastated when I left the hospital. My girls were 14 and 7 at that time. I was told to start on coumadin and we would wait and see if my liver enzymes came down after discontinuing methotrexate. So now I had to wait before starting a new treatment for pulmonary hypertension. At the end of April 2002 my pulmonary artery pressure was now 114. Thank goodness my liver enzymes returned to normal. I started on tracleer in June 2002 and I am still taking it. It’s been over two years since viagra was added. I am doing pretty well. My girls are now 21 and 13 and they say they notice that I can walk faster than I used to. My last echo in July 2008 showed a pulmonary artery pressure of 27!