Doctors, This Is How to Inspire Your Sickest Patients to Hang On

As a cystic fibrosis (genetic lung disease) patient who has had two double lung transplants — and every side effect that goes with it — I have a lot of doctors. At last count I had 23 doctor contacts in my phone. Most of them are long-standing relationships, but that doesn’t necessarily mean each is significant.

I am a professional patient. Doctors are either like my bosses — telling me what to do — or they are like my peers, collaborating with me on what is best for a certain health challenge. I get along well with most of them. Of course, I’ve had my run-ins with bad doctors. Luckily, though, these have been few and far between. I’ve been fortunate. Doctors can have a large impact when they are such a fundamental part of your functioning. Sometimes doctors’ words are the only direction we get as patients. It makes what they say incredibly substantial. We take our lead from them and their prognosis perspective.

Out of all the doctors I’ve worked with through the span of my 32 years, I consider myself to have had truly meaningful relationships with three — one being my transplant surgeon, who not only performed both of my double lung transplants, but also a fundoplication and a g-tube placement; the latter two I was initially fighting but I caved knowing I would be under his care. In my experience, a long-standing relationship with a surgeon is rare. I’ve had six other surgeons operate on me, and only one I still see monthly; the others I never see. Surgeons are rigorously trained to be masterful cutters. It is not their job to provide care to someone in the interim between surgeries. They get in, remove the problem, and generally get out. They have more surgeries to perform. That is their calling in life. There are plenty of doctors that handle the in-between or after-care.     

When I first met thoracic surgeon Dr. Joshua Sonett, I was probably 16 and had already been listed for a lung transplant (under a different surgeon) for several months. He had just taken over the lung transplant program, which was in its infancy at the time, and everyone was enamored with him. Some surgeons embody a rock star status. I was too young and self-involved to really pay attention. The last thing I wanted to think about was the fact I needed a lung transplant or the guy that was going to cut my chest open.

I had been on the list for two years, building up time and not yet ready for transplant, when I got a serious lung infection and my health rapidly declined. I went from being a full-time, somewhat-normally functioning college student to someone on full-time oxygen who could barely walk. It was unfortunately time to face reality and reassess things with the big-time surgeon I had been able to avoid for so long.

I remember Dr. Sonett walking into the exam room and being a bit startled at how sick I was. I thought he saw this disturbing descent all too often, so I was surprised that he was surprised. But to be fair I was frightfully skinny, maybe 70 pounds, and my breathing was so labored I am not sure how anyone could stand to listen to me. I wasn’t the stable patient he had met before. I tried to concentrate on the hiss of my oxygen tank, and not his disbelief, as he sat down. He rolled a chair up next to me. He shook his head a bit, almost defeated, as he spoke. “I hope we can get you well enough to give you new lungs.”

I instantly cried as hard as my fragile self would allow. He asked me why I was so upset. That was a hard question for someone that doesn’t generally talk about emotions and is usually too stoic for her own good. I also didn’t need or mean to upset my mom who was next to me, always. “I didn’t know there was a possibility that we couldn’t do this anymore.” He put his hand on my rail thin leg, and for the first time I saw beyond the scalpel. I saw authenticity, believability and humanity. “I don’t tell this to everyone,” he paused, “but we are going to get you better and we are going to get you new lungs.”

For someone who is literally in the deep trenches of life and death every day, it meant something quite vast that he thought I still had a shot. He has had a lifetime of seeing who makes it and who doesn’t. And there was something he saw that day, and I think a few more times since, that led him to believe I would survive. And I did.

There are doctors that will lead patients, fight with patients and their families and defend the sickest, and that is what can make the difference between life and death. They have the capacity to change an attitude or an outlook in people who are in the deepest entity of despair. Their actions and words are influential. Sometimes it is all a patient has. We trust them and their guidance.        

When a doctor can connect with a patient on any personal level, and it doesn’t have to be some big dramatic gesture, but just enough to feel like more than a nameless patient, it can intensify the reason a patient will fight. Every doctor doesn’t have to be my champion and know me on an intimate level, but if a doctor is invested me, I am invested in them. And it makes me want to do better. It makes me fight harder. It’s a capricious cycle — I want to give them a reason to succeed and I want to be their success story.

Follow this journey on Breathing & Butter.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? Check out our Submit a Story page for more about our submission guidelines.