On February 27, 2019, I was admitted to Barnes-Jewish Hospital in St. Louis due to acute respiratory failure, in the hopes that a new set of lungs would become available soon for transplant. My ability to breathe had taken a nosedive over the previous year or so, due to a genetic condition called Alpha 1 Antitrypsin Deficiency. All the nebulized medicines and inhalers I was using were no longer effective. Without a transplant, I would die sooner, rather than later.
For the first three months or so in the hospital, I suffered from significant weight loss (down to 118 pounds at one point, and I’m six feet tall), and even more significant delirium, due to the high level of CO2 in my bloodstream. The delirium led to hallucinations that ran the gamut from funny to frightening.
Stamp & Chase is pleased to post this guest blog from our long-time friend Ken DeSieghardt. We are grateful to the caring staff at Barnes-Jewish Hospital for bringing him through this incredibly challenging journey. His story represents what is good and right in health care.
Thankfully, I don’t remember much about that period in the hospital. Friends and family came and visited. I got to know which food I liked and what to avoid. I wandered sometimes at night, thinking I was somewhere else. I received IVs, a pile of pills each day, and had a feeding tube for a spell. Eventually, my condition worsened to the point that the doctors had to perform a tracheotomy. This meant I couldn’t speak above a whisper, darkening my world even more.
What I do remember about those days, however, are the staff members (RNs and Medical Technologists) who let their guard down just a bit, while they doing an amazing job keeping me alive.
These professionals let me see into their personalities through a joke, an off-handed remark, a comment about the food, an encouraging aside at just the right moment, and so on. Such behavior let me know them as a person, not just a highly skilled health care worker.
This is so critical, particularly in the case of long-term hospital stay patients. I was in the hospital for 4 ½ months – receiving my transplant on June 8 and being discharged on July 8 – and without such interplay with the staff on a regular basis, I’m not certain how I would have been able to handle the monotony, the needle sticks, the blood sugar checks and the insulin shots, etc..
And the waiting.
My company assists school district, higher education and cities with communication issues. In doing so, we hear a lot about how education has changed, because of the need to care for “the whole child.”
The same is true in health care settings. Get a read on the patient’s manner and dialogue style early on. Test drive a joke here and there. Open up a little about yourself and your aspirations. Anything to get the relationship beyond the needles, pills and vitals checks at 4 a.m.
At Barnes Jewish, such conversations made me feel human, appreciated and understood. That, plus whittling down the menu to just a few food choices, made my experience much more bearable.