Interview: David Fajgenbaum.
Dr. David Fajgenbaum has undergone an extraordinary medical experience. During medical school, he had his last rites read in 2010 and nearly died four more times as he battled a rare and incurable illness. Thanks to a drug that he discovered in his lab—and began testing on himself—he's now in his longest longest remission ever (5.5 years).
He leads the effort to cure his disease—idiopathic multicentric Castleman disease—as a physician-scientist at Penn and co-founder of the Castleman Disease Collaborative Network. You can read more about his story in this New York Times story or watch this video of a Today show story from a while back, or this recent Good Morning America piece.
The Chan Zuckerberg Initiative selected his research approach as a model for all rare diseases, his treatment has helped other patients with his disease (but not everyone treated with it), and he's just begun a clinical trial of this drug for other patients this month.
As if all that's not enough, he just published a memoir: Chasing My Cure: A Doctor's Race to Turn Hope Into Action.
I couldn't wait to talk to David about happiness, health, and everything he's learned from his experiences.
Gretchen: Have you ever been hit by a lightning bolt, where you made a major change very suddenly, as a consequence of reading a book, a conversation with a friend, a milestone birthday, a health scare, etc.?
David: Yes, I became ill with a mysterious disease during my third year of medical school and was hospitalized in the ICU with multiple organ system failure. I was so sick that my last rites were read to me because the doctors did not think I would survive. As I reflected on my life, I realized that I didn't regret anything that I had done in my life. I only regretted the things that I didn't do and would not have the chance to do in the future. Thankfully, chemotherapy saved my life, but I have gone on to have four more life-threatening relapses. Ever since the first time I nearly died, I have lived with a sense that I am in 'overtime' and every second counts. I live by the motto 'think it, do it.'
Is there a particular motto or saying that you’ve found very helpful?
Every time I hope or pray for something, I remind myself that I need to 'turn my hope into action' and reflect on what actions I can take to help get my hope closer to reality. After I nearly died for the 4th time and learned that I had run out of treatment options and there were no promising leads, I decided to turn my hope for a cure into concrete action. I dedicated my final year of medical school to conducting laboratory research on my own samples and creating the Castleman Disease Collaborative Network to advance research internationally. As a result of my efforts, I identified a treatment in my lab that I thought could work and began testing it on myself. I'm currently in my longest remission ever.
What’s a simple activity or habit that consistently makes you happier, healthier, more productive, or more creative?
We all face challenges in life. I've found that humor can be a powerful force. No better example comes to mind than when I was hospitalized for the third time and my dad and I went for a walk on New Year's Eve. I had a large belly filled with 8 liters of fluid due to my kidney and liver failure. I was bald from the chemotherapy and I wore a mask because I was at constant risk of developing an infection due to the chemotherapy. During our walk, we passed the family waiting area and saw that there was a drunk man who had fallen out of his chair. My dad helped him back into his chair and he looked at us and said, "Thanks so much. Good luck to you and your wife." I was confused at first and then realized he thought I was my dad's pregnant wife. I looked at my dad and told him, "Man, you've got an ugly wife." Soon, my dad and I were doubled over in laughter! Humor can be a powerful force during some of our darkest times
What’s something you know now about happiness that you didn’t know when you were 18 years old?
When I was 18 years old, I knew that finding silver linings could help us to find happiness, peace, and meaning in the midst of challenging times.
Now, I've found that reflecting on what a silver lining could be and then going out and creating a silver lining can be even more powerful and bring about even more happiness during difficult times. For example, I cope with the fact that I have this deadly disease by knowing that I have created the Castleman Disease Collaborative Network that is doing good for the world and for patients. My diagnosis led me to create this silver lining that is helping others.
You’ve done fascinating research. What has surprised or intrigued you—or your readers—most?
I've been most surprised that there are drugs already FDA-approved for one condition that may be treatments or cures for other conditions, but we just don't know about them yet. Consider this: there are 7,000 diseases with no FDA approved treatments and about 1,500 drugs that are approved for at least one condition. Many diseases share many genes, cell types, and mechanisms in common, so many drugs could theoretically work on multiple diseases. I know this first hand because I am currently on a drug originally developed for kidney transplantation that is treating my idiopathic multicentric Castleman disease and saving my life. That drug was sitting in my nearby pharmacy while I was going in and out of the hospital over my first three years after diagnosis. How many more drugs are there out there that are treatments for a disease with no options, but we just don't know it yet?
In your field, is there a common misperception or incorrect assumption that you’d like to correct?
Yes, in medicine there is a sense that doctors are authorities on everything. I have been guilty of feeling this way myself. Of course, we all train and grind for years and years to have authority. We all want it. And we all seek to be the trusted voice in the room when someone else is full of urgent questions. And the public expects near omniscience from physicians. But at the same time, all of that education, all those books, all those clinical rotations, all of it instills in us a kind of realism about what is and what is not ultimately possible. Not one of us knows all there is to know. Not even nearly. We may perform masterfully from time to time—and a select few may really be masterful at particular specialties—but by and large we accept our limits. It’s not easy. Because beyond those limits are mirages of omnipotence that torture us: a life we could have saved, a cure we could have found. A drug. A diagnosis. A firm answer.
The truth is that no one knows everything, but that’s not really the problem. The problem is that, for some things, no one knows anything, nothing is being done to change that, and sometimes medicine can be frankly wrong.
What is the happiest moment of your life?
I've had a lot of highs and lows, especially over the last nine years. But the birth of my daughter Amelia is definitely the happiest moment of my life. And she continues to bring me so much joy.
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