From Doctor to Patient: Navigating Heart Failure and Finding Healing Insights
Updated: Aug 25
During her emergency medicine, residency, Alin Gragossian, DO, MPH, went into heart failure.
A few weeks earlier, she was healthy, with a little bit of a cough, and the sniffles, and as she put it, “I was running the week before I went into cardiogenic shock.“
Suddenly, she found herself in the intensive care, unit of her own hospital, being cared for by her friends and colleagues. At that point, her ejection fraction was estimated to be 5% and she was in need of a heart transplant. Fast forward to today, Dr. Gragossian has finished her critical-care fellowship, and now shares her story far and wide.
Being a physician so early in her training that suddenly became a patient in such a dire medical situation gives her a perspective that not many of us have.What she learned from being a patient can help us to be better physicians.
One of the points that she makes was when she was getting wheeled back into the operating room to get her heart transplant. Although she has been realizing all along that this was a potentially fatal condition, and would be fatal without an urgent heart transplant, that realization really hit home when she was being wheeled back to the operating room at 2 AM to get her transplant. She realized that she could die on the operating room table. And she shared this with her mother.
“I said ‘mom, what if I die?’
“She said the best thing a mom could ever say. “‘You could have died so many times up until this point and you didn’t. You are going to be fine.’
“That’s what I needed to hear.”
Sometimes, when we are discussing risks and benefits with our patients, we get mired in what we are supposed to say. Sometimes, after we’ve had the risks and benefits discussions, and the patient is about to have a surgery or a procedure, to soothe their anxiety, would it be OK for the physician to simply say, “everything is going to be OK.“?
If the patient has a complication and everything isn’t OK, does that mean we were misleading them? I don’t know the answer, but it would seem a hand on the shoulder, a calm demeanor and the words “everything is going to be OK,” might be just what the patient needs to hear.
Something else that Dr. Gragossian learned from her time in the intensive care unit is that you hear everything! Sitting in a hospital bed without much to do, you do a lot of listening. You hear the different providers talking to each other about you, about the other patients, and maybe if you are lucky, spilling some tea about some hospital romances. The point here is, assume you are in earshot and keep it professional.
When Dr. Gragossian was in the hospital, her parents were by her bedside every night. Her recollection of a lot of the events is spotty given how sick she was, but her parents remember everything. She makes the point that it is critical to check in on the caregivers, make sure that they are understanding everything, make sure that they are in the loop. Also, take every opportunity to check in on them and thank them.
In her particular situation, where they were many different teams with different goals, it was hard for her parents to understand why the ICU doctor was happy with the fact that she was stable. If they were so happy, why did she still need a transplant? This illustrates why it’s important for each team to communicate with the patient and the caregivers the specificity of their role and what their goals are for the patient, especially if it might seem like the goals of one team contradict the goals of another team.
She recommended that one team do most of the communicating so that the patient and caregivers get the plan in one cohesive way versus bits and pieces. She also stressed the importance of communicating the dynamic nature of decision making where new information leads to changes in the plan. To an outsider, this may seem like contradiction and indecision, which could shake their faith in their providers.
We also discussed how in her situation, social media was amazing and wonderful. She found a community online of other heart transplant, patients who look and sound like her. Young professional women who could help her answer questions like “what is dating like with a heart transplant?” This isn’t something an eighty-year-old man with a heart transplant would be able to help her with.
And one final piece of advice learned the hard way: don’t chug ginger ale right after being extubated.