This is how it begins.
Before we can talk about how your body will be cut open to make way for new lungs, you must sit in a meeting room and watch an informational video.
You settle in next to a woman who carries an oxygen tank like you do, plastic prongs in her nose. She gives you a half-smile. Her son — you assume it is her son — is sitting with her and taking notes, and you feel a little jolt that you are alone here.
When you were diagnosed with lung scarring called pulmonary fibrosis nearly three years ago, the doctor said you might be dead by now. When the weeks and months passed and you did not die, you tried to think he was wrong. But then the cough worsened, you couldn’t catch your breath, and your doctor gave you the oxygen and a referral here, to talk about a lung transplant.
The video ends. It was nearly an hour long and a blur of facts and faces. All you can remember was the part when they said you would need three people to make up your “support team.” Three people.
You don’t think of yourself as alone. You have an adult son and daughter, but they live out of state. And then there is your sister, but her husband’s been sick, too. Three people. You should probably talk with the doctor about this, about what you’ll need to ask of these people, and how much they will have to commit.
The young woman at the front desk startles you when she calls your name. It’s just a few steps to the exam room but it all feels so slow with the oxygen. This is where you’ll see the doctor.
You readjust your sweater. You don’t get dressed up much these days, but you chose a cardigan this morning, real shoes instead of sneakers. Though you tell yourself that what you wear won’t affect the decision of whether you are a good candidate for a transplant, it’s better to be safe.
I’m running a few minutes behind, scanning your chart. You’re already waiting in the exam room when I arrive, and you move to stand, but the oxygen tubing is all tangled in the legs of the chair, so I tell you not to worry.
I explain that my role is to learn some more about you, answer questions, and help you begin to decide if a transplant is the right path. You nod. I encourage you to tell me everything, from the start. Whatever I record in your note today will travel with you from visit to visit, in the electronic record’s version of forever, so I want to get it right.
We begin. You tell me about the misdiagnoses of asthma and allergies, referrals from specialist to specialist, and then, finally, a diagnosis of pulmonary fibrosis.
I ask you about what your life is like now. As you think about your days, you realize — for what feels like the first time — how small your world has become. You have not taken a walk outside for years. Just doing your laundry steals a day’s energy.
I tell you that you’re a good candidate for lungs, if this is something that you want. You’re relatively young and otherwise healthy. Your weight is not too high and not too low. You do not take high-dose steroids or narcotics. I feel comfortable scheduling you for the next step, which is an overnight in the hospital. But you are alone here, and so I have to ask you about your people. Those three people.
This part always feels hard, as being alone is so wrapped up in shame, yet I have to ask. No one can survive a lung transplant’s physical and emotional toll without support. Being loved is a kind of a prerequisite.
You say you have people, adult children and a sister. But here’s the truth: You’re not sure that there are three. So I encourage you to talk to your children, to talk to your sister, to tell them the stakes. People step up, I say, though I also know that fear can just as easily make people back away. I hope this isn’t what happens for you. You nod again.
I stand and pull out my stethoscope. As if on cue, you start to unbutton your cardigan. What a silly outfit to have worn, your expression says, all these buttons to undo. I place my stethoscope on your chest and hear the Velcro noise of air moving in and out of your scarred lungs. I notice the way that years of low oxygen have left your fingernails curved and misshapen.
“Do you have any other questions?” I ask as I sit back down. You re-button your sweater.
There is so much that I want you to know. I want to tell you about the patients in the ICU who might never really make it out of the limbo of recurrent hospitalizations and ventilator dependence. I also want to tell you about the woman who’s back to riding her motorcycle and the man whose transplanted lungs allowed him to meet his grandson. I want to show you all the other ones too, the people in the middle, fighting infections or the slow progression of rejection, navigating their way toward a new normal. I want to ask you if you are willing to risk what you have now to grasp at the good.
But you shake your head. “No,” you say, thumbing through your fresh new binder of information. “No more questions right now.”
I think I can understand. You’re not there yet. You are still counting your three people and there is a limit to what you can take in today. Maybe your family will rally behind you and you’ll get lungs and make it back home in weeks. Maybe it will take months and more procedures, and though it won’t be exactly as you’d hoped, the transplant will give you the time to find new things in the world to enjoy. Or maybe none of that will come to pass. Maybe you’ll decide against transplant altogether. I can’t know any of that in this visit.
All I can do, in this moment, is to be present. I can answer your questions. I can tell you what you will need in order to move forward. And then I can gather my papers and pause for a moment, before the next patient, to watch as you leave.
Daniela Lamas, M.D., is a pulmonary and critical care doctor at Brigham and Women’s Hospital, a faculty member at Harvard Medical School and Ariadne Labs, and the author of “You Can Stop Humming Now: A Doctor’s Stories of Life, Death, and In Between,” published this week by Little, Brown and Company.
Idiopathic pulmonary fibrosis IPF is a horrible painful way to die and watching my mom at my young age of 25 was unbearable!! she died in 1991, I am now 42 years old and there isn’t a day that I don’t think about her. Thanks God this terrible disease can be reversed with the help of herbal remedies. My father was another victim of IPF, but i make sure he stays alive. After so many days of research online, God led me to Best Health Herbal Centre. I was told by a doctor called DR LINDA, that my father IPF will be reversed, immediately i purchased their IPF herbal remedy(2 bottles). It was unbelievable to see my father living IPF FREE after 6 weeks of usage. My father have been IPF free for more than 3 months. But my heart still aches, I wish I knew this 25 years ago, when my mom was first diagnosed. My father last pulmonary function tests were changed from baseline, no more fibrotic scars in his lungs.
I just want to point out that having 3 people who can commit to being a caregiver during the lung transplant journey and “being loved” are not the same thing.
A pointless and poorly written anecdote by a physician who likely has seen very few lung transplant patients. What purpose does this article really serve?
If lung transplant is even mentioned to a patient, they deserve to have a doctor speak to them about expected outcomes, survival, etc in order to make an informed decision. The article implies that these things were not discussed because the patient had ‘no more questions’. Say what?
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