dysp·ne·a

/dispˈnēə/

Noun MEDICINE

1. difficult or labored breathing.

There are few symptoms that those of us without personal experience with a palliative care diagnosis haven’t had, at least temporarily in our lives. Pain, yes. Nausea/vomiting, yes. Fatigue, insomnia, depression, anxiety, constipation, diarrhea, cough, hiccups, headaches, loss of appetite and dry mouth, yes and thankfully temporarily. 

I had never before experienced dyspnea, at least not associated with something other than heavy exertion or exercise which I knew would improve with rest. Dyspnea at rest or with minimal exertion was new and troubling. I viewed it as a possible harbinger of anxiety, and although I had things to feel anxious about, had never been bothered by chronic anxiety or a symptom that felt this strange, insidious, unrelenting and progressive. Attempts to relax and meditate did seem to help, at least initially, and I summoned all of my inner voices and intuitions to believe that this was anxiety masquerading as something else and that I could meditate or HeartMath® my way forward and through.

Until I couldn’t. I couldn’t carry on long conversations, feed our farm animals, haul hoses to fill up water troughs, walk across the pasture to check on the new calves, or walk to my office from the parking lot at work without having to stop or slow down. Attempts at “getting more exercise” were out of the question as even pulling weeds or sweeping the floors made me stop in my tracks. After my stubbornness and intuitions/inner voices gave way to reason and increased concern, I would eventually be diagnosed with a saddle pulmonary embolism with a large clot burden and right ventricular failure. The invention of a treatment called EKOS almost immediately put me back into the category of patients who no longer have to worry about the disruption that dyspnea can bring to their lives. Thankfully, dyspnea was another temporary symptom I could say I experienced, have new empathy and compassion for, and was in fact treatable with an amazing technological advance in medicine that promises to change the landscape of treatment for thromboembolic disease and symptom management in a multitude of patients. Except when it can’t. 

For patients with chronic or acute dyspnea caused by underlying diseases that are not amenable to new technologies, or are unresponsive to conventional treatments like diuretics, bronchodilators, antibiotics, steroids, blood thinners and supplemental oxygen, the treatment options are somewhat limited. I cannot begin to tell you how uncomfortable the feeling of not being able to breathe can be, how it can disrupt everything you attempt to do, including your ability to concentrate, focus, communicate, or relate to anything other than your fight to take your next breath. It disrupts your sanity. I now understand the wide-eyed stares of patients who have needed to be intubated and ventilated because their work of breathing has exhausted their last reserves. For patients with a terminal diagnosis and acute or even chronic and unrelenting dyspnea, who have decided to forgo any ventilatory support, I now understand deeply how providing relief for their dyspnea with opioids or even terminal sedation would be preferred to living with this debilitating and oppressive symptom. 

Information on EKOS: https://www.bostonscientific.com/en-US/products/thrombectomy-systems/ekosonic-endovascular-system.html