Another doctor appointment, but with unexpected good news

Maintaining levels of PAH symptoms seemed like our best-case scenario

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by Karen Schultz |

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It’s not often that pulmonary arterial hypertension (PAH) patients enter a visit with their physician and hear what they want to hear. Many times for my husband, Tim, visits have been a gross reminder of his condition and how limiting it can be. A typical, predictable rundown: check-in, vital signs, six-minute walk test (always trying, even subconsciously, to beat his last effort), echocardiogram, chest X-ray, and labs.

The results of those standard tests may vary, but they rarely improve significantly. Such a result would be unexpected. Running instead of walking, having endurance instead of stopping to rest, and taking the stairs instead of the elevator as a choice instead of a need: They’re all significant improvements, but they aren’t something that happens without divine intervention.

The standard for Tim would be small improvements and an activity level that allows him to enjoy his life and work. Hearing that his cardiac function hasn’t worsened feels like a huge win. Oxygen levels staying greater than 90% during a six-minute walk test can inspire a fist pump and encouragement.

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The management of pulmonary hypertension is a long road

Tim’s way of working through his PAH diagnosis has always been to push himself with treatments, keep current with research news, and stay active in his care. That last one is how he deals with the reality that PAH is progressive. Looking for large improvements can be futile.

As I help care for him, I choose to offer advice and support when asked, in whatever way he chooses. That works for us and keeps our expectations managed. Support, for me, means trusting him and being there for the provider visits. I’m present to pick up his mood when his PAH news is not so great, or to celebrate with him when news exceeds his expectations.

But he often leaves an appointment reminded that he’s sick, which makes simply maintaining his health good news.

There was a moment a few years ago, however, at a routine appointment with his PAH physician, in which Tim’s optimism served him well. It clicked for me then that I’ll continue to support him handling his disease in his own way.

Tim’s physician looked over his six-minute walk test results, labs, and studies with her usual precision and said, “Well, Tim, looks like you’ll die from something other than PAH.”

I started tearing up, with years of suppressed feelings and fear spilling out. Tim simply smiled at me, winked, and said it was what they’d been working toward for 18 long years. It’s what we both needed to hear.

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.


Dennis Halloran avatar

Dennis Halloran

I was told the same thing this year, that I would probably die from something else and it was enlightening.I had CTEPH diagnosis seven years ago at 77, and had PTE surgery 12/02/2016 at UCLA and feel normal, after removing a dozen clots from my lungs. on Eliquis and Microzide and get an annual Echocardiogram. No DOE when daily walking. Keep on truckin!

Lovina F. Springer avatar

Lovina F. Springer

I will be 18 years this coming January when there were no meds and nothing to treat thromboembolic pulmonary hypertension. I was given two years to live. I was not a candidate for thromboendartorectomy (sp). Hubby and I went home, had a good cry and decided to live our lives to the max. Now take adempas, opsumit, and as well as several other support meds (warfarin, Losarton, etc. I’m able to garden, keep my house, travel and have fun. Just a little slower some days and the fatigue comes a little sooner. GREAT doctors and support from her staff.


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