Living long enough to see progress in PAH treatment

Years ago, when my husband, Tim, transitioned from intravenous Flolan (epoprostenol GM) to the oral medicine Uptravi (selexipag), it was a major milestone. The weeks-long process came about through careful planning between Tim and the physician who manages his pulmonary arterial hypertension (PAH). The daily lowering of his Flolan dose was based on his symptoms and tolerance of Uptravi.

Once the transition was complete, he was required to maintain his Hickman central catheter for several weeks. But the day finally came for it to be removed. That too was a milestone, symbolizing the hope we didn’t have when he was diagnosed.

Back in 2002, when the line was placed, it became a part of Tim, physically and mentally. There was no mention of the Hickman being temporary at the time because no alternative was on the horizon.

Later, in 2017, Tim and I entered the hospital for a cardiac catheterization, having been assured that if his pulmonary pressures were within a certain range, the staff would remove the Hickman before we left the hospital.

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A day to remember

We received positive results and were eagerly anticipating the removal of his central line. While waiting, we were told that the staff was searching for someone to do it. Finally, a disheveled young man entered the room wearing a backpack, looking as if he’d skated in from a long day at school.

The young man introduced himself as a resident who’d be “taking out an IV.” He looked at Tim’s catheter and with obvious puzzlement said, “Man, I’ve never seen one of these in person. We don’t use these anymore. I’ll give it a shot.” He then proceeded to yank, pull, and use different angles and strategies to remove the device. Finally, Tim’s Hickman came out free and intact.

As I looked at Tim without the central line, I saw 15 years melt away. Time had been a friend to us. Since he’d been diagnosed, his prognosis had slowly improved. Advances in treatment and PAH procedures had exploded. The central line and IV medication had saved Tim’s life and allowed him to see all of that progress in the field.

I realized that the resident removing Tim’s Hickman was likely studying for his learner’s permit when that central line was placed. Five years before the removal, we still had no indication that an oral medication would become available.

As the resident began to dispose of the Hickman, I asked if I could keep it. Oddly, I didn’t want it to be thrown away. I assured the resident that I’d take that central line straight to the Smithsonian Institution. After all, time was on our side.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.