Patient Advocacy: A Chat with Doug Lindsay
A chat about hope and innovation with a biologist-turned-patient who invented the surgery that saved his life.
Our team had the pleasure of chatting with Doug Lindsay as a part of our Carium Patient Advocacy Program back in June and he’s since become even more of a luminary after being featured on CNN Health.
Lindsay is a keynote speaker, workshop designer, and personal medical consultant who’s using his personal experience navigating the healthcare system to help people trapped in that system, and this is his story.
Tell us about you and your health journey.
I grew up around my mom and my aunt being sick. The common thread was their condition and the fact that year after year, doctor after doctor, they still had no answers. That was hard.
The summer after my junior year of college I came down with a fever and I was diagnosed with mono, so I came home to rest for the summer. I went back to school in the fall, but I only made it one day into my senior year before my illness forced me to drop out of college.
I had cramping muscle pain, my heart would race, and walking, standing, and even meals made me light-headed. I just laid on the floor of our house with the room spinning. Although my onset was different than my mom’s and my aunt’s, it soon became clear that I had the same condition that had left them disabled for the last thirty years.
I started on thyroid medication — which helped — but wasn’t a fix. One day my doctor told me my symptoms changed too rapidly to just be accounted for by a thyroid problem. That sentence really stuck with me and would soon become very important.
Book after book, specialist after specialist, I started to look for answers.
Book After Book
By that point I was bed-bound 22 hours a day, lying in a hospital bed in my living room.
I was a slow reader and too weak to hold up a book — especially a medical textbook, so I read while lying on my side. That meant the left page was easy to see but you can’t see the right page that way. So, I figured out the best way to read to avoid rolling over a thousand times to read a thousand-page book: each time I’d get to the bottom of the left page, I’d flip the book and read the right page upside down.
Each book I read told me more than I knew before. I was able to piece together a few quotes, and I theorized there was likely an entire class of disorders that involved the autonomic nervous systems malfunctioning. So, I compiled what I had, and I took this information to share with the medical experts I saw.
“Problems, like you describe, don’t exist.”
This was the response I received from the doctor when I shared my theory. And my response was simply, “but they could.” Doctors practice from experience, so the idea that they don’t know a specialist who treats this kind of condition, but rather someone’s come up with it while laying in a bed in their living room sounded absurd. But I was a scientist, and the idea that there was a system in the body and nothing could go wrong with it sounded absurd to me.
So, that was the stalemate until nine months later, when I finally got a computer with internet access. I soon found a nonprofit devoted to the kinds of problems I’d theorized existed but had been told did not. They were called “dysautonomias.” I began reading medical journal articles by the dozen.
Eighteen months later I was asked to present a short paper at an annual meeting of the American Autonomic Society, to a worldwide gathering of autonomic investigators. Some of my family thought I was insane for traveling to attend the event because it was expensive to travel and it was so hard on my body, but I knew it was my only chance to get eyeball-to-eyeball with these guys.
After my presentation, my proposed treatment was immediately challenged by a Senior Investigator from the NIH. We went back and forth a couple of times in front of my poster, then the group moved to the next poster. I could have been upset that he told everyone why he didn’t think my treatment idea would work, but I realized he’d treated me like any other scientist there and that’s all you can ask for. So, I didn’t give up there.
Sitting in my hotel room that night with friends (meaning laying, because I couldn’t really sit) I called the hotel front desk. Unlike everywhere else in the world where it’s hard to reach a doctor, I knew about 150 doctors from the conference were staying at this hotel and because the doctor’s office secretary and the person working the front desk at the hotel were different people, I could probably reach any of them. So I asked to be connected to his room.
We met up after the dinner that evening and chatted for a long while. And I got my work done: I met all the doctors in the field, and the laboratory heads, and many of them were with me from then on out. I’d gone there to find a collaborator, but on that, I came home empty-handed. Yet I established relationships with these doctors and scientists that would become really important as the years went by.
Specialist after Specialist
Over the 14 years of my research work, I ended up working with 35 senior faculty at 28 different places.
Practicing medicine is very much like a pyramid where a doctor is at the top and he or she treats a huge number of conditions. Academic medicine is more an inverted pyramid, where there’s an entire laboratory that sometimes only studies one specific protein.
If you want to work with the person that studies the protein that matters to you or the condition that matters to you, it doesn’t matter what city you live in — it matters what city he or she lives in. So that’s how I began working with Dr. H. Cecil Coghlan at The University of Alabama at Birmingham. I’d met with Dr. Coghlan at the American Autonomic Society meeting, but we didn’t begin working together until 18 months later.
My local doctor ordered a port-a-cath put in my chest for the new use I’d developed for an old drug, Levophed, and then he cut me loose with this thing in my chest and no medical care. The original plan was for Dr. Coghlan to advise from 500 miles away, but when my local doctor dropped me, I had no local team.
On Christmas Eve, I called Dr. Coghlan and we talked for about a half-hour. I had missed one pill that morning and my heart rate was 140 for an hour while I was laying in bed. We talked about things, and he told me to come to Alabama. Nearly five years into my illness, Dr. Coghlan and I started working together.
His tilt table testing showed I had a very severe autonomic problem, and the testing we did over the next two years finally showed that my condition might be surgically correctable. The downside was that there was no surgery to help me without giving me a new disease. If a surgery would help me, it would be a surgery to take out the middle of my adrenal glands and leave some of the adrenal cortex behind.
I spent two and a half years researching how to do this seemingly impossible surgery. Eventually, I got ahold of the paper where it all began. This surgery had initially been developed by Dr. Bernardo Houssay in Argentina in 1923 on dogs. It turned out that Dr. Coghlan knew Dr. Houssay personally because Dr. Coghlan trained in Argentina under Dr. Houssay’s protege. As odd as a coincidence as it seems, that is sometimes how academic medicine works. Curiosity about the same things is what brought Dr. Coghlan and I together. That same narrow curiosity led me to Dr. Houssay’s work, which was fundamental to my work and was also related to Dr. Coghlan’s lifetime of work.
So, we literally had a 1923 dog surgery being used in the 21st century to help me, and we had a direct line from the Nobel Prize winner who developed it to me, who we hoped would benefit from it.
I got the surgery in 2010 on my left adrenal gland and I got the second surgery in 2012 on my right adrenal gland. It took me until 2014 to recover. In medicine, new takes time, and my recovery from the second surgery was quite complicated. So, from 1999 to 2014 I got sick, figured out what was wrong, and built the teams to get the work done to treat it and save my life.
How are you now?
I take 10 different medications each day, but I’m pretty good. For being bed-bound 22 hours a day for 11 years, I have a pretty functional life today — and that’s pretty great. I am exquisitely sensitive to all sorts of medications, and even the wrong kinds of meals can upset my life. But compared to what any reasonable person had as a guess for how this would turn out, we certainly blew them away!
My mom passed away in 2016 — she was too sick to get the surgery. She was supposed to only live six months and was put on one of the drugs I developed a new use for, and she lived another eight years. She made the choice that she wanted to live, so we got her that.
My aunt is healthier at 71 than she’s been since her 30s. At 31, she couldn’t tie her shoes and at 71, she can ride an exercise bike. She continues to improve on one of the meds, and because of that, she doesn’t want to bet her life on the operating table. When she talks about what we’ve done, she says:
“This is Douglas and he saved my life. He figured out what was wrong with us so people didn’t think we were crazy anymore.”
What is your current profession?
When I give a speech, the people that come up to me afterward tell me my speech was amazing, but they don’t usually say “come speak at my company.” They usually tell me a personal story about their nephew, aunt, wife, or neighbor.
When I reach an audience full of people, each one has already identified in their own mind who they know that is sick and that they wish I could help.
I’ve learned again and again that I can literally affect the course of events in a field if I’m given an opportunity. So that’s the task — I’m building a business as a Personal Medical Consultant.
The things I’ve done seem unlikely — most doctor’s office groups will never develop a new use for one drug, and I’ve developed new uses for five.
Doctors continue to start with “the horse isn’t a zebra” mindset. They think, “because it wasn’t done yesterday, the chance of it being done today is very slim.” I understand that, but once you’re dealing with rare diseases, general population odds sometimes mean very little.
One of the hardest things is actually convincing people who have seen doctors and not gotten things sorted out that they may not be stuck forever. It’s hard for them to believe that if they tell me something that’s wrong, I may be able to tell them something to help them change that. I don’t treat patients, but I can help support patients and doctors with research and communications tools that I’ve used but that isn’t common in medicine.
I start by listening and trying to get all of a patient’s medical records. I’ll look for what it might be, or for pieces of information that can escape people’s attention. I also work closely with doctors.
The first thing we need to realize is that doctors don’t do homework on individual patients. Doctors are like jeopardy contestants — either they know the capital of Nebraska or they don’t. They either know what’s going on with you or they don’t. And when you go to an office visit, doctors only make one decision — to treat, advise, or refer.
If they’re not the right doctor, we’ll find the right doctor — find the person who has the knowledge and cares.
What do you think would be helpful to you in helping these people?
I’m interested in the different ways people are trying to turn medical records and information into something usable because I’ve had to invent those for myself as custom solutions.
If a doctor can only give you 11 minutes, you need to be able to move them from where they are to where you need to be in that time. That means that as a patient I would spend 100-to-1 or more of my own time developing ways to solve doctors’ problems before walking into those meetings. This is why tools that help keep track of information in an accessible way are very important to me.
You can also learn from atypical experiences. The standard operating procedure that I’ll be figuring out with the complex patients I’ll be working with is going to be useful in helping people with less complicated conditions also find a more engaged way to partner with the medical system.
There is often a reluctance on the physician's side to accept information that is brought in by a patient. Do you see that commonly and is that also part of this challenge?
I needed doctors in different locations to be able to review my case so I built a digital model of my adrenal gland. The head of pathology at Brown — who checked my model for me and became a friend — thanked me for building it and showing him the adrenal gland in a new way after 30 years of working on it.
I also took it to my surgeon who actually performed the surgery on me and we walked through the whole model. When he agreed to do the surgery, he took out a pamphlet he had with a cartoon drawing of an adrenal gland and drew a line with a pen to show me where he’d cut.
You could see him looking at the model I’d built like a six-year-old may look at a tray of sushi — intrigued, with his hands behind his back, looking but not quite engaging.
It’s an emotional decision on the part of doctors to be reluctant to information that comes in a new form. They’re comfortable with the ones they see every day — the standardized format. Their spidey sense says engaging with something new is riskier than how they did it in the appointment just prior to this, and that creates their hesitancy.
I had a six-word email from an NIH investigator that constituted one of the most sophisticated opinions you can obtain, but it didn’t look like much because it wasn’t on letterhead with a fancy scrawled signature. So I took the new information and the traditional information and I packaged them both in a way that felt familiar — I built communication documents to harmonize these different types of information, and these were more readily accepted by the medical experts.
What has been most difficult about your healthcare experience?
Being right didn’t mean anything if I couldn’t get a team to come with me on this journey. We could have never “run the experiment” without the team, so it was very much a communications issue. Doctors are not going to send a patient home with the task of solving a communications problem and hope they come back with something great. I recognized the need for these kinds of solutions after running into roadblocks, and that’s how I invented stuff to solve it.
I had to spend a hundredfold more time thinking about doctors than they’d spent thinking about me (and that is still probably an underestimation). I didn’t realize until years later that, as a biologist, I studied them as if they were subjects, like salamanders or wolves. I had to understand what they were telling me by their behavior when I couldn’t just ask them. Field biologists do that all the time.
What has been most satisfying about your healthcare experience?
After copious amounts of effort spent understanding and accommodating medical experts, I was eventually brought into the fold in some really special ways.
I once called Dr. Manny Bravo at the Cleveland Clinic and his assistant patched me through to his cell phone while he was at the airport waiting for a flight to the Philippines to see his family. He was willing to take my call because over time we’d developed a relationship. When he gave me info, he knew I used it. I’d go get yardage from the advice he gave me, and he knew I was calling him because the answer to my question wasn’t written down anywhere or I’d have already found it.
When you can show people that kind of purpose and effort, and all you need is a bit of the expertise they’ve spent a lifetime gathering to potentially change a life, it was a deal a lot of specialists were willing to take in helping me.
When I got the surgery and it worked, the people advising against the surgery were overjoyed when they were wrong. The art of medicine is about healing, and when compared to a patient that can walk again, being wrong was nothing.
At one point I was talking to a mentor of mine who is a cell biologist after my first surgery. I told him I thought two particular graphs were our strongest ways to convey the results of what’d happened. I’ll never forget his response, “You’re the strongest result.”
What is one piece of advice you share when you meet with a patient or family struggling?
Leadership is the biggest gap in our healthcare system for chronic illness and rare disease patients. If you break a leg, you can dump it in the lap of the attending at the emergency room and he or she will send you to an orthopedist and you’ll probably be just fine.
If you have a rare disease, you need to have a different relationship with your doctor — you can’t just dump it in their lap. Even the world expert of a condition may have only seen six cases (not 600 or 6,000) over the course of their career. You have to strike a new deal with your doctor, understanding that they don’t need to know everything to help you and that you will try to bring them fact-checked information to pow wow.
You also need to have an idea of what matters to you. I tell people to go in with one big ask. If you go in with a whole list, you’ll ask for five things and they’ll give you the three easiest and think they helped you. If you focus the appointment on the one most important ask, you’re putting the focus on what you have identified that may shape your life.
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