Slipping Through the Cracks: How Medicine Has Gotten Better… and Worse

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Looking back at everything now, I realize that almost all of my assumptions about modern medicine were wrong. 

As a baby boomer born in the mid-1950s, I grew up watching heroic doctors on TV and in the movies. I also lived near a few of them — good doctors who cared very deeply about and strived to find what was wrong with their patients and how to treat them. It was the tail end of the Age of House Calls! But for decades the only real health issue I had was a burst appendix in the mid-1980s. 

When problems with my breathing, my gut, general fatigue, and a bunch of other odd symptoms first began 15 years ago, I knew that there was something wrong and assumed that in due course we’d figure out what. When I consulted the appropriate specialists every couple of years for the respective issues, I expected them to ask the right questions, run the right tests, and ultimately come up with the right diagnosis. 

Instead, they would give me a cursory exam, run a standard test or two, and then say, “Well, you look pretty healthy to me!” I would leave a little perplexed, aware I had some issues that were real and not going away. 

Then in February 2023, while skiing in the French Alps at a place I’d been before, I found that this time I couldn’t walk up and down the hills around the town without gasping for air. I wasn’t ready to panic, but I knew I had to get serious about what was happening to me. 

When I got back home, I went to my PCP, and he ran some tests and found my liver numbers were off the charts. I saw my gastroenterologist, and he sent me up to Mass General in Boston, where I did find a fantastic doctor. He was busy, but curious, and he always listened and gave me his time and attention. After he came up with an effective treatment for what turned out to be primary sclerosing cholangitis (PSC, a serious disorder of the bile ducts/liver area), my worst symptoms went away. 

I had gone from “healthy as a horse” for most of my life, to a set of perplexing but relatively mild problems, to a constellation of symptoms altogether more ominous.

And that’s when I started to see that things were different in medicine today. 

But next it was my thyroid, and then my heart and my lungs, loss of appetite, stomach issues, horrible shortness-of-breath episodes, and more. Again, I assumed that my PCP would help put me in touch with other doctors and supervise my care until we got to the bottom of what was going on. 

I had gone from “healthy as a horse” for most of my life, to a set of perplexing but relatively mild problems, to a constellation of symptoms altogether more ominous.

And that’s when I started to see that things were different in medicine today. 

My Concierge PCP

Most importantly, the PCP of today is not very invested in figuring out what’s wrong with their patient. He’s just a dispatcher sending them to different specialists. 

And then the specialists see things almost exclusively through the lens of their specialty and don’t want to try to connect the dots with other specialists. Call it disjointed or uncoordinated specialization.

I actually said to my PCP, “I want you to be the quarterback, to supervise and be in touch with my specialists so we can find a possible connection between everything that’s going on.” He replied, “I’m sorry you feel that way.” He had no inclination to play that role, whether from lack of time, capacity, or interest. He might as well have said, “Screw you.” 

I couldn’t believe it. This was a concierge PCP I pay a lot of money for, and he didn’t want to do his job.

My Kingdom for a Diagnosis 

For the next three years my health kept worsening until, in the spring of this year, I reached a point where I needed a walker all the time and oxygen 24/7. I’d skied almost 1,500 days in my life, and I played tennis twice a week. I had an athlete’s build: I was 5’8” and 172 pounds, and no one ever said that I looked a bit overweight. But in the three years after my PSC diagnosis, I lost 55 pounds until I was down to 117. I looked skeletal. 

I saw 20 doctors, including six pulmonologists, and I developed concise but detailed four- or five-page outlines for every specialist. Each contained general information about my case as well as specific information related to their specialty. In other words, I was a very organized and prepared patient. At our first meeting, I would go over the outline and hand them a copy of it. 

But I would also tell my story to anyone I saw — an old friend, a new acquaintance, anyone — just in case they knew someone in their life who had a similar condition and maybe it had a unique diagnosis. 

I was running out of time, watching my health decline and not getting any closer to finding an answer. That helplessness of not knowing is the worst part. At some point it begins to feel like any diagnosis, even a terrible one, would be better than no diagnosis.

A Twist of Fate

And then I got lucky: I had a customer of my home theater business who was a recently retired internal medicine doctor, and she took an interest in my case. 

At times when we were installing her system, we got to talking about my health issues. I’d talk to anybody, but especially someone who was a doctor and might have real light to shed. As we sat in her basement theater room, I would tell her everything I could think of and she would listen intently and ask me a lot of questions. 

She ultimately spent 10 hours over several months just asking me questions about my case, and she took my three-inch-thick stack of printed reports — blood tests, imaging tests, pulmonary function tests, and many other tests — and she read through every single one of them. 

She came up with a couple of diagnostic hypotheses that didn’t turn out to be right, but she stayed with it and about three months ago she texted me. 

I got lucky: I had a customer of my home theater business who was a recently retired internal medicine doctor, and she took an interest in my case.

This was when my health was rapidly declining. I had already been hospitalized five times for nearly a week each time when serious episodes made it almost impossible for me to breathe and brought my blood oxygen perfusion from a normal above 95 percent down into the range of 65 percent — where organ failure and death are frequent results. 

She wrote, “I think you may have Adult Onset Cystic Fibrosis, and I want you to get a test for it. If you do have it, it would explain a lot of things about your health problems.” 

I told her she’d better give me two or three sentences on how to explain to my pulmonologist why I needed this test. Otherwise, he’d just say I don’t think you have CF and wouldn’t order the test, a response that I knew from bitter experience. 

When I gave him the information, he said, “I’ll run the test, but I don’t think you have cystic fibrosis.” There’s a 15-minute test where the salinity of your sweat is checked by taping a couple of electrodes onto each arm, and the numbers tell the story by how salty the sweat is — it’s that simple. It’s not high-tech or expensive.  

I tested positive in both arms. 

The pulmonologist, after seeing my positive CF test, simply said I would now be seeing a CF specialist — who turned out to be a great doctor. As for the pulmonologist, he offered no apology for missing — in fact, not even considering — the correct diagnosis. 

Unfortunately, I then had to wait for genetic testing to make sure that I had the type of CF that can be treated by the wonder drug Trikafta, which costs $1,000 per day but is covered by Medicare. And during that 10-week waiting period I lost 10 more pounds and had to go on oxygen 24/7. 

If This Could Happen to Me…

Here’s the most unsettling thing about this whole experience. I’m organized. As I said, I keep an outline that explains my medical story so, when I meet a doctor the first time, I can go over the history of my case. Every outline has certain questions that I bring up with every doctor: Could this be long COVID? Could this be Lyme disease? Could this be the vagus nerve? 

But it’s another question that I always bring up that is the troubling one. I would say, “You know, as a three- or four-year-old, I had some persistent breathing trouble and my doctor ordered a test for cystic fibrosis and I tested borderline at that time for CF.” (This was using the same sweat test that is still used today.) 

This is what infuriates me: Looking back at the 20-plus doctors I’ve seen, every one of them heard me say, “By the way, when I was around three or four, my mother took me to a respiratory specialist because I was having trouble breathing, and I tested borderline for cystic fibrosis. … I don’t know if it’s important, but I thought I should mention it.” 

So how many of those 20-plus doctors I saw over three years said at that point, “That’s interesting, maybe we should run the CF test; it’s quick and easy”? The answer is zero. 

In fact, rather than follow up, they would immediately move on from my question about my cystic fibrosis borderline test and ask me unrelated questions like “Do you smoke?” or “Do you drink alcohol?” or “Do you use recreational drugs?” As if I had been speaking in Chinese about my borderline CF test or hadn’t said anything about it at all. They just went right back to their checklists without even saying, “Well that’s interesting, but I don’t think it applies here.” 

I slipped through the cracks in the modern medical world and I shouldn’t have, because I had things that most patients don’t have.

And that’s the part I never saw coming. I just figured that I should let the doctors do their job. I’ve done many things in life, but when it comes to needing a doctor or a lawyer, they went to school for it and I didn’t, so I like to hire good doctors and lawyers when I need them, and let them do their work. I’m not part of the modern Google/AI times here. I’m not going to Google it and try to prod them with “What about this or that?” because I figure they know much more than I do. Because, while I could spend a weekend at it, they have spent decades learning their craft. 

I ended up learning one thing: I slipped through the cracks in the modern medical world and I shouldn’t have, because I had things that most patients don’t have. Even though I’m 71, I was always fit and always very active. I was also financially capable of paying for whatever test was not covered by Medicare or any kind of care that required money. I was able to close my business so I could focus solely on getting well. And I went to a good school, and most people think I’m pretty sharp. So I had intelligence and education. I had money. I had fitness. And I had time. 

Yet, with all these assets, I slipped through the cracks. 

What a Patient Needs to Understand About How Medicine Has Changed

I realized that, living until relatively recently with no health issues to speak of, I had lost track of how the medical world had changed from what it was when I was growing up. I pictured my doctors thinking about my case at home, trying to satisfy their curiosity about what was going on with me and my health, comparing notes, working together to get to the bottom of it all. 

I hope you too realize, whether from your own experience or from learning about mine, that it’s not the same anymore. Almost no one is looking tenaciously for the real cause of a patient’s health issues, if it’s not obvious. Only a very few doctors are really looking for the cause of your problems. They are focused on a treatment, not a cause. This is especially problematic if you have a set of symptoms that can be treated separately but that have their roots in a single unprobed and undiscovered cause.

They just want you to know that if you’re coughing, you need to take this stuff and take other stuff for your fatigue and something else for stomach troubles. Try this respiratory inhaler or try that one. Take that pill. And if these remedies don’t work, they then go to plan B: different inhaler, different pill, and more tests. 

That’s true of just about every specialist. And remember that they generally don’t talk to each other and are not staying up late — so you can wind up with these unconnected specialists picking at your health problems, directed by a PCP who will not follow up with the specialists.  

I got two very lucky breaks: a very caring and generous medical professional with more than a touch of Sherlock. and a newly developed wonder drug for my condition. Not only does Trikafta arrest the disease’s progression, it can sometimes reverse some of the effects. And that is what it seems to be doing with me, and what I hope it will continue to do.

I’m still on oxygen 24/7, but I have started to gain back some weight, and my first ride on my old Schwinn Airdyne exercise bike lasted a shocking 27 minutes. I had been hoping for a quarter of that.

The Trikafta has improved my energy level dramatically. I now ride the bike at least 20 minutes every day. I’m motivated — because, first, I want to survive and, second, I want to get some of my old self back. 

And that’s my story. I never thought I’d be telling anyone that I slipped through the cracks of the medical world. Me! I thought things like that happened to people without all my assets. I thought it was just a matter of trusting the process and letting the doctors do their job: They would burn the midnight oil and get to the bottom of things sooner, not later. And I would then recover as much as possible after the true cause of my health issues had been found.  

Just like it always was on TV and in the movies. The heroic doctor comes to the rescue of the faltering patient. 

Instead, I could not get anyone to correctly diagnose my problem for three and a half years, while my health began to circle the drain. If not for the lucky break of telling my story to my customer, a doctor of great curiosity and perseverance, I might be going down that drain very soon.