• Pathways to Trust

See Me, Not Just My Diagnosis

“Have you been evaluated for a transplant?”

I glared at the Emergency Department physician. I have cystic fibrosis, so I have some experience going to the ED. Up until I turned 50, hospital visits were pretty rare occurrences. But despite my relatively stable medical status and healthy appearance, healthcare providers in the ED would hear my diagnosis and almost reflexively ask if I had yet taken steps to begin a double lung transplant journey.

This upset me for two reasons. First of all, lung transplants are only performed on end stage patients. So when they asked that question, it felt to me like they were giving me a death sentence. It was jarring. One minute everything was fairly under control – just a very treatable case of pneumonia or an intestinal blockage which could be handled by a few short days in the hospital. The next minute we’re talking about a last ditch effort to buy me a little more time.

As upsetting as this thought was, there was an even larger message communicated with that question. I was so far from being a lung transplant candidate, the only way anyone could ask that question is if they were paying no attention to me as an individual. Yes, CF patients may eventually need a transplant, but by the time they did they looked nothing like I did at that time, and their test results were not even in the same universe.

These HCPs just reverted to what they read in a textbook. And I am not a case study in medical school. Patients are unique, and we all deserve to be treated as individuals.

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