I didn't just study the broken healthcare system. I survived it.
• 43 hospitalizations. 6 major surgeries. 3 organs removed.
• A $250,000 treatment no doctor prescribed.
• This is my story, and why it matters for the future of healthcare.
• A $250,000 treatment no doctor prescribed.
• This is my story, and why it matters for the future of healthcare.
I want to tell you two stories.
The first one I talk about on stage regularly. It is a story about a misdiagnosis that began when I was a teenager, the decade of medical crisis that followed, and the single decision, made at age 26, that changed everything.
The second story I have mostly kept quiet. Until now.
It starts about ten years ago. It involves scar tissue, small bowel obstructions (SBO), a treatment I invented myself, and over $250,000 of my own money. It is still happening, seven to nine hours every week, as I write this. For context on the seriousness of SBOs, Lisa Marie Presley died a few years ago from this very problem.
Together, these two stories are why I do what I do, why I stand on stages in front of healthcare organizations around the world and tell them, with genuine urgency, that the status quo is not good enough.
And that technology, done right, can fix it.
Chapter One: The Misdiagnosis
When I was sixteen years old, I was diagnosed with an autoimmune disease.
By my mid-twenties, the toll was:
I was twenty-six.
I said no.
The decision that changed everything.
Saying no to the morphine pump was the first time I decided to take full control, and become the Patient as the CEO of my healthcare team.
I rebuilt my entire care team from scratch, the way you would hire for any important position: with criteria, with interviews, with non-negotiables. I needed physicians who would work with me, not on me. Doctors who would look at a decade of documented treatment failure and ask whether the original diagnosis was actually correct.
I found them.
And they found what years of healthcare had missed: I had Crohn's disease.
Within 24 hours of my first Remicade infusion, I went into full remission.
Overnight.
A decade of hospitalizations, the surgeries, the medications, ended in less than a day.
Diagnostics are hard.
I repeat: Diagnostics. Are. Hard.
I don't blame any of my prior physicians for misdiagnosing me. I was lucky enough to have access to 5 of the top hospital systems in the US. So it wasn't just one busy doctor. It was some of the top doctors at the most respected hospital systems.
Every day I think about how I won Life's Lottery by being alive in a time of great technological advances. 100 years ago there would have been zero hope. 50 years ago, there weren't great medications like Remicade. For perspective, it wasn't until the the 1930's that penicillin was discovered, and not until the 1950's was penicillin commercialized and widely available!! Before antibiotics, surgery was extremely high risk, and people could die from a small cut.
Every one of us alive today is luckier and more fortunate than anyone who has lived in the past 200,000 years of known human history.
I am telling it because this is what happens when patients are not treated as partners in their own care. When the assumption is that the system is right and the patient is the variable. When there is no mechanism for a young woman to say: something is wrong, and it is not me.
That experience is the foundation of everything I talk about on stage. The patient's perspective is not a soft add-on to healthcare strategy. It is the most important data point in the room, and the one most consistently left out.
When I was sixteen years old, I was diagnosed with an autoimmune disease.
By my mid-twenties, the toll was:
- 43 hospitalizations
- 6 major surgeries, including a total colectomy with J-pouch, the complete surgical removal of my colon
- 3 organs removed
- Years of escalating medication, including 80 milligrams of methadone every day
I was twenty-six.
I said no.
The decision that changed everything.
Saying no to the morphine pump was the first time I decided to take full control, and become the Patient as the CEO of my healthcare team.
I rebuilt my entire care team from scratch, the way you would hire for any important position: with criteria, with interviews, with non-negotiables. I needed physicians who would work with me, not on me. Doctors who would look at a decade of documented treatment failure and ask whether the original diagnosis was actually correct.
I found them.
And they found what years of healthcare had missed: I had Crohn's disease.
Within 24 hours of my first Remicade infusion, I went into full remission.
Overnight.
A decade of hospitalizations, the surgeries, the medications, ended in less than a day.
Diagnostics are hard.
I repeat: Diagnostics. Are. Hard.
I don't blame any of my prior physicians for misdiagnosing me. I was lucky enough to have access to 5 of the top hospital systems in the US. So it wasn't just one busy doctor. It was some of the top doctors at the most respected hospital systems.
Every day I think about how I won Life's Lottery by being alive in a time of great technological advances. 100 years ago there would have been zero hope. 50 years ago, there weren't great medications like Remicade. For perspective, it wasn't until the the 1930's that penicillin was discovered, and not until the 1950's was penicillin commercialized and widely available!! Before antibiotics, surgery was extremely high risk, and people could die from a small cut.
Every one of us alive today is luckier and more fortunate than anyone who has lived in the past 200,000 years of known human history.
I am telling it because this is what happens when patients are not treated as partners in their own care. When the assumption is that the system is right and the patient is the variable. When there is no mechanism for a young woman to say: something is wrong, and it is not me.
That experience is the foundation of everything I talk about on stage. The patient's perspective is not a soft add-on to healthcare strategy. It is the most important data point in the room, and the one most consistently left out.
Chapter Two: The $250,000 Hack
The problem my surgeons had no good answer for ...
Here is something over 90% of patients who undergo major abdominal surgery will develop, and almost none of them are warned about beforehand: adhesions.
Adhesions are internal scar tissue. After abdominal surgery, the body's healing process can cause fibrous tissue to form between organs, between organs and the abdominal wall, between tissue layers that were never supposed to touch. Imagine spider webs growing inside your body, slowly binding your organs to each other and to your muscles.
After six major abdominal surgeries, I have hundreds of adhesions. Possibly thousands.
For years, those adhesions caused partial bowel obstructions. A partial obstruction is not merely uncomfortable, it is a medical emergency in development. Partial obstructions become full obstructions. A full obstruction that is not treated within days can be fatal.
I have had my entire colon removed, which means my gastrointestinal system feels entirely different to me than it does to most people. I can tell within minutes when I have a partial obstruction. I know what is coming.
So I did what I always do: I researched. I called every surgeon and physician friend I had. I looked for new solutions, emerging protocols, anything.
The answer, consistently, was surgery. Cut the adhesions. Which, of course, creates new adhesions that will require surgery, which will create new adhesions. A cycle with no exit that doesn't involve risk to your life.
Emergency adhesion surgery, I should note, is one of the most dangerous abdominal surgeries performed. It is often done under urgent or emergent conditions, the anatomy is distorted by prior procedures, and complications, including death, are a real possibility. In fact, for a patient like myself, there is up to a 40% chance of dying within a month of surgery. FORTY PERCENT.
I was not willing to accept that this was my only option.
So I invented my own treatment.
The logic seemed clear to me: this is a mechanical problem. Scar tissue is physical. Breaking it up from the outside with enough pressure, applied correctly, and consistently should be possible.
I began deep-tissue abdominal massage. Not the kind of massage most people imagine. Targeted, intense, sustained pressure applied directly to the adhesion sites. The kind of pain that is genuinely comparable to aggressive post-surgical physical therapy on a joint, except on your abdomen. On scar tissue. On organs.
It hurts in a way that is difficult to describe to someone who has not experienced it.
But here is the critical distinction, the one that made it worth doing: the pain stops the moment the session ends. The second my therapist stops, the pain is gone. That is not true of post-surgical pain. That is not true of an obstruction. That is not true of any of the complications that surgery carries.
Temporary pain in exchange for avoiding a procedure that could kill me was not a difficult calculation.
I have been doing this for over a decade. Seven to nine hours per week, every week, when I am in town. I have not had a bowel obstruction requiring hospitalization since I began.
The total investment: over $250,000.
What the science eventually confirmed:
I began this treatment because the logic was sound. At the time, almost nothing in the medical literature acknowledged manual therapy as a meaningful intervention for adhesion-related bowel obstruction.
In 2018, after I had already been doing this for over a year, Stanford University published a study on massage and small bowel obstruction. The study validated the concept I had already been applying.
What the study did not document, and what no published research has come close to approaching, is the frequency, duration, and intensity I have sustained over the past decade.
I want to be clear: I am not presenting this as medical advice. I am not suggesting that anyone with adhesions should replicate what I have done without medical guidance. What I am saying is that I looked at a condition for which medicine had no good answer, applied rigorous logic and a willingness to invest in my own survival, and found something that has worked for me in a way that nothing else did.
The experiment is still running.
Why I Tell These Stories on Stage
I speak to healthcare organizations: hospitals, health systems, pharma companies, insurance companies, nursing associations, technology companies — about the intersection of AI and the future of medicine.
Every audience I stand in front of is grappling with the same underlying question: how do we close the gap between what technology can do and what patients actually experience?
I can answer that question with data. I do. I bring the latest research on vocal biomarkers, remote patient monitoring, autonomous AI diagnostics, the shift of clinical care into the home.
But data does not change rooms. Stories do.
When I tell an audience of healthcare executives what it means to be twenty-six years old, on eighty milligrams of methadone daily, being offered a permanent morphine pump — and what it took to say no — something shifts. Not because it is dramatic. Because it is real, and it happened inside the system they run.
When I tell them about spending $250,000 on a treatment I designed myself because the system had nothing better to offer, they understand viscerally what "patient as CEO" actually means. Not as a marketing phrase. As a survival strategy.
My patient story is not a footnote to my expertise in healthcare technology. It is the reason the expertise matters.
I speak to healthcare organizations: hospitals, health systems, pharma companies, insurance companies, nursing associations, technology companies — about the intersection of AI and the future of medicine.
Every audience I stand in front of is grappling with the same underlying question: how do we close the gap between what technology can do and what patients actually experience?
I can answer that question with data. I do. I bring the latest research on vocal biomarkers, remote patient monitoring, autonomous AI diagnostics, the shift of clinical care into the home.
But data does not change rooms. Stories do.
When I tell an audience of healthcare executives what it means to be twenty-six years old, on eighty milligrams of methadone daily, being offered a permanent morphine pump — and what it took to say no — something shifts. Not because it is dramatic. Because it is real, and it happened inside the system they run.
When I tell them about spending $250,000 on a treatment I designed myself because the system had nothing better to offer, they understand viscerally what "patient as CEO" actually means. Not as a marketing phrase. As a survival strategy.
My patient story is not a footnote to my expertise in healthcare technology. It is the reason the expertise matters.
