Strap in for the tale of why your hero is spending most of his life down YouTube rabbit holes of cardiology videos while blundering his way around many many medical centers and exposing many problems with American health care even before he gets close to the operating table. Yes it’s Matthew Holt’s pre-surgical complications – the complications that have arisen before he even gets his failing aortic valve fixed. And yes this is the last for now of a multi-parter!Part 1, Part 2,Part 3, Part 4Part 5
By now I have met with expert physicians and their teams at 5 major medical centers (UCSF, Stanford, Cleveland Clinic, Cedars Sinai & West Virginia University). I have spent hours talking to the AI gods at Claude, ChatGPT and Inciteful Med, annoyed the hell out of all the cardiologists and other doctors I know, and basically got enough contradictory advice that it’s all up to me.
The main decision comes down to whether I should get a TAVR or the RAVR. And because I approached Cedars about the BELIEVERS clinical trial rather than going direct to Dr Makkar, they put me into that process. The trial randomizes patients into either TAVR or RAVR, likely performed by Dr. Dominic Emerson who is the Director of Robotic Cardiac Surgery, Smidt Heart Institute, and one of the surgeons mentioned by Dr Badhwar. (I had a quick chat with him after he called me while I was on a ski boat in Lake Tahoe, although due to the shoulder pain I had not gone wakeboarding!)
The study documentation stressed – and this was backed up unprompted by one of the study coordinators – that I could back out at any time. So if I were randomized into the RAVR cohort, I still had the choice to pull out and ask Dr Makkar to do a TAVR on me anyway, or of course go to West Virginia and get surgery there.
And of course there is still the question of how risky a TAVR on my valve will be. I did take Dr Yeung’s advice seriously, and a study that Dr Makkar oversaw back in 2020 did show that (for patients considerably older than me) the risk of all cause mortality at 2 years in bicuspid valve TAVR patients was higher with bad calcification (like me). On the other hand, Dr Makkar told me that his unpublished data between TAVR and SAVR at 5 years showed no difference. He also directly told me that I was a good candidate for a TAVR and he has done more bicuspid TAVRs than anyone else. He’s also working on techniques that break up the calcification on the “join” before the TAVR, although it’s unclear if he’ll do that in the BELIEVERS trial and to me
I originally wanted a TAVR because it was a much easier recovery than surgery. I also have two more major surgeries to go through within the next few months, and it would be a big stress on me and my family to make that three. Plus, I both would be happy to contribute to a medical study and am pretty confident that in a decade or so, cardiology will have advanced a lot more and I probably wouldn’t need open heart surgery even if the TAVR valve fails sooner than the 10-15 years I am hoping to get out of it.
So I crossed my fingers and hoped that the computer would randomize me into the TAVR group at Cedars and obviate the need for any uncomfortable decisions about pulling out of the trial. And it did. I’ll be getting it done in early September.
This isn’t exactly Lebron James making The Decision, although that show lasted only 75 minutes and also went on way too long!
Some concluding thoughts
I would obviously rather have not had to write this little memoir. But given I went through it, there are several conclusions smacking me in the face.
Strap in for the tale of why your hero is spending most of his life down YouTube rabbit holes of cardiology videos while blundering his way around many many medical centers and exposing many problems with American health care even before he gets close to the operating table. Yes it’s Matthew Holt’s pre-surgical complications – the complications that have arisen before he even gets his failing aortic valve fixed. And yes this is a multi-parter!Part 1, Part 2,Part 3, Part 4
Claude told me that Dr Amy Fiedler at UCSF was an expert in RAMT (right anterior minithoracotomy–the non endoscopic rib entry technique). I sent a note to my original Cardiology group on the UCSF MyChart system saying that I understood she did this surgery and could I have an appointment with her? You can see from my messages with them below that the appointment was set up.
It should not have been.
I had a very brief conversation with Dr Fiedler and almost immediately it became apparent I was wasting her time. She told me she does not do that RAMT surgery for valve replacement and she specializes in heart transplants, and some other specialized heart surgery. I think that Claude had read the web page about her doing minimally invasive cardiac surgery and put 2 + 2 together and made 5. But to be fair her UCSF webpage didn’t give me the level of detail she gave me in the video call, and the UCSF cardiology team set up the call even though I presume someone there knows that she didn’t do the thing I was asking about.
To be clear, Dr Fielder was very gracious and very helpful in her advice. I just felt bad for wasting 15 minutes of her time. To reiterate, the time of a cardiac surgeon is way more valuable than mine. I left telling her I hoped I would never need her services!
***
Next stop was to drive down to Palo Alto and pop into the Creamery for a chocolate malt and cheeseburger in advance of meeting Dr Yeung, the cardiologist. The med tech did a four limb blood pressure test on me and also a full 12 lead EKG. I of course had had all that earlier at UCSF, and wasn’t sure why I was having more. But anyway, she soon left saying Dr Yeung was coming.
Instead Dr Anson Lee came in. He’s the cardiac surgeon working on the valve team. He basically told me that Dr Yeung wouldn’t do a TAVR on me. Now I wasn’t expecting to see him (nor did I know who he was till I looked him up after he left the room) but we had a very helpful conversation about valve surgery and the best ways to do it. Then he went and got Dr Yeung. Together they pulled up a colorized 4D CT scan of my valve. (I assume it came from the CT I had in January). Dr Yeung showed me in precise detail why he thought giving me a TAVR now was a bad idea. (Basically too much calcification on the fused part of the leaf, and it’s too oval, which would make the procedure risky and likely not fit properly). He told me that if I had the surgery, someone would easily put a TAVR in my surgically implanted valve in 12-15 years, and that’s all I would need–unless I plan on living forever or to 100!.
Dr Lee told me that if he was getting it done he’d have a full sternotomy, although he actually does mini-sternotomies. He also was the only person thus far to tell me NOT to do it if I am asymptomatic. His logic is that something like 1/150 patients die during the surgery so don’t have it if you don’t need it (i.e. are asymptomatic). The reason he’d want a full sternotomy for his choice of entry was to give the surgeon the least complicated shot at the valve.
He also said that his mini-sternotomy patients can drive after 2 weeks, not 4-6. Which seems to contradict what the UCSF team told me about the same procedure.
But in my case, needing knee surgery and shoulder surgery, the shock of those on the heart would count as “symptoms”. So Dr Lee told me I should get the surgery if I was going to get the shoulder or knee fixed. But he also said that the higher echo reading might have been a false negative, and it might be years before I have symptoms.
I’m not sure my trip to Stanford left me much clearer. But the chocolate malt was damn good.
***
Next up was connecting with the oft-cited team doing RAVRs at University of West Virginia led by Dr Vinay Badhwar. Both Dr Lee and Dr Fiedler unprompted said that he was the surgeon when it came to the robot valve replacement and his email was available online. (Most doctors don’t make their email easily available). I had Claude write an email describing my clinical situation and sent it to him late one night.
The next morning before I got up, there was a reply from Dr Badhwar in my inbox, and shortly thereafter, his team was all over me. They got my information, got access to my imaging at UCSF, and his physician assistant Amy Simsa called me a day later to describe the process. Within a week I had a video consult with Dr Badhwar and his team. In terms of responsiveness they were by far the best organization to deal with. Stanford, UCSF, Cleveland, Cedars et al could take a few lessons!
The only slight wrinkle was that I got a robocall on a Sunday from the facility telling me where to check-in to my appointment–clearly not set up for telehealth. I noted this in a brief email to his office and got a reply from a human (who I will not identify to spare their blushes) at 5.15pm on a Sunday night! I’m not sure they’re not working too hard.
Although Dr Badhwar was very modest and very keen to tell me about others working with him as he spreads the gospel of RAVR, he and his team have clearly done more of these more successfully than anyone else and are the world experts. If I want a RAVR it’s almost certain that I have to get on a plane, and so I will likely end up in Morgantown, WV–which is about an hour south of Pittsburgh for those of you who missed geography day in high school. That’s not a sentence I thought I would ever write!
***
My last (for now) call was with the CEDARS team setting up the BELIEVERS trial. I spoke with Dr Raj Makkar. He said he had done 8,000 TAVRs and more than anyone else on bicuspid patients. He disagreed with Dr Yeung and Dr Elmariah. He says that my valve was suitable for a TAVR, and he said that the risk of stroke during TAVR was less than the risk of death from SAVR. He also said that they are about to publish 5 years of data showing that the resilience of TAVR valves was the same as SAVR valves. He suggested using a 26mm valve on me, and that it would likely last 10-12 years, and that not only would he be able to do a TAVR in TAVR on that one, but he had already been doing 3rd TAVR in TAVR in TAVR.
I asked if I showed up at his clinic but not for this trial would he have done a TAVR on me? He said emphatically “yes”. He does use the Sentinel Cerebral Protection System which essentially captures any calcification dislodged from ascending up the aorta to the brain, although my friend Claude tells me the data on whether that prevents a stroke is murky. Frankly Dr Makkar was very self assured and had I met him at the start of this journey I wouldn’t have bothered going anywhere else! Of course, because he wants to do the trial and get that data out in the world, he wants me in the trial, and I might be randomized into the surgical group.
This is I hope the end of the pre-surgical part! With the slight exception that I haven’t actually yet made a decision about what to do!
Strap in for the tale of why your hero is spending most of his life down YouTube rabbit holes of cardiology videos while blundering his way around many many medical centers and exposing many problems with American health care even before he gets close to the operating table. Yes it’s Matthew Holt’s pre-surgical complications – the complications that have arisen before he even gets his failing aortic valve fixed. And yes this is a multi-parter!Part 1 here
So on the Friday afternoon I was readying for my video call when there was a car parking emergency. I had to move two Sprinter vans and a car belonging to guests who were all out apres skiing out of our driveway so my wife could get her car out of the garage to get to an appointment she had. Although I was as quick as I could, I was about 10 minutes late for Dr Beygui but he very nicely called me up wondering if I was still okay to do it, was very cordial even though I made him wait, and we had a nice chat. He basically didn’t give me any new information in this conversation and yes UCSF did get paid for it! He was mostly assuming that I couldn’t walk a couple of blocks without getting short of breath but at the end of it we agreed that because I was in good physical shape and able to go snowboarding all day I would go ahead with a knee surgery later in the summer and only come back to him when I became symptomatic.
Starting in March I got the requisite knee imaging (I had an MRI and 2 X-rays confirming my meniscus is gone and knee was pretty trashed), met with Dr Bini and the ortho team and started prepping for the surgery later that summer–which basically meant going to the gym and doing lots of weights and resistance training on my knees.
A little later I got an unexpected call from Dr Beygui’s physician assistant who told me that he was still trying to line me up for the open heart surgery. I told him I was still keener on a TAVR. He said that I shouldn’t have a TAVR because the TAVR valves only last 5 to 7 years. Yeung from Stanford’s original report told me they lasted about 10 to 12 years. Elmariah the UCSF cardiologist said that they thought they lasted 10 plus years but there was no good data. Given you can probably have one TAVR and then have another put inside when the first one fails and then maybe even another (TAVR in TAVR in TAVR), these numbers actually matter!
Here’s the crux of the TAVR issue. If you can add 10 + 10 + 10 that gives you another 30 years of life which sounds pretty good to somebody in their early 60s. But if you can’t get more than 5 to 7 years out of a TAVR and can only do one more “TAVR in TAVR”, then you’re getting 10 to 15 years before you need to have a very complicated open heart surgery because it’s now replacing two different artificial valves. In that case I might not survive and I wouldn’t even be old enough to be President!
As you can see this decision is starting to get a little bit complicated.
But the good news was that I could stop thinking about it because my heart wasn’t getting worse and the orthopedics (and anesthesia) team at UCSF was happy to do the knee replacement.
As we were all steaming down this path I got a call from Dr Beygui’s scheduling assistant. My initial agreement had been to have an echocardiogram 6 months after the last one which would actually have been after the knee surgery. I’m not sure how much coordination between the departments there was given what happened a bit later but Dr Beygui requested that I have an echocardiogram before any surgery. As I was going in anyway to have a CT in mid-June to prep for the knee surgery, I said fine.
In another great drama of American health care it turns out that my insurance had changed. For most of the first half of the year I purchased a Blue Shield of California HMO on the ACA exchange called Covered California. In May my wife got a job and we then moved over to being covered by her employer’s insurer (well, ASO TPA as it turns out) Cigna.
Cigna and the entire University of California Health system decided to have a dispute which threatened that Cigna would not cover UCSF starting on July 1st. I won’t go into the crazy logic of why an insurance plan that one buys on an annual basis starting in January has contracts with providers that expire in the middle of the year, but welcome to America. Because of this the orthopedic team moved my surgery date up into late June just 4 days after all the prep imaging including that echocardiogram.
Oh and a few weeks earlier I had had a very minor snowboarding fall going very slowly in soft slushy snow. I banged my shoulder but for some reason it didn’t get any better. I actually went and had some physical therapy which seemed to help, but as I was hanging out so much at UCSF, I also had an appointment with the shoulder specialists. They sent me for a pretty uncomfortable MRI and the result from that was that I had total tears in all my rotator cuff tendons. The recommendation for that is surgery that also has a long recovery, but if you ignore it for too long the muscles can atrophy. Claude was very depressed for me when it interpreted that MRI report!
A spanner in the works
Those of you familiar with sod’s law can guess what happens next. The result of the echocardiogram was that the aortic stenosis had gone from being severe to being very severe. The precise number was that my peak velocity went from 4.6 m/s in Jan to 5.1 m/s in June just 4 and ½ months later.
I discussed this with my trusted health confidant and Claude guessed that this might be a problem and the anesthesia team might not want to have me get the knee surgery.
The next sequence of events reveals that nobody in American healthcare talks to each other.
It’s hard to imagine but I may now be in possession of the stupidest letter I’ve ever received from an American health insurance company–-and I’m the guy who got five identical letters on one day from Blue Shield of California telling me that they had changed my primary care doctor when I had initiated the change.
A little backstory. As those you’ve been following along with my various telenovelas may remember that last year I was diagnosed with a failing heart valve. I also have a failing left knee due mostly to snowboarding into a tree 24 years ago.
I was attempting to put off doing anything about the heart valve for as long as possible because it sounds painful and unpleasant, and I was hoping that I could go ahead with a knee replacement so that my snowboarding can continue apace. My doctors are at UC San Francisco and they agreed that I should have the knee replacement on July 6th, assuming that my heart valve had not got much worse. On June 16th I went into UCSF for a bunch of knee replacement pre-workup and they also checked my heart.
However, my new insurance company, thanks to my wife’s new job, is Cigna. Those of you in California may know that Cigna was having a big dispute with the University of California Health system and that its contract with them was due to expire on June the 30th of this year. Why a health plan and a big provider organization have contracts that expire in the middle of the year when the employers and people who use the health plan network buy them on an annual basis starting in January I don’t know – and it’s ridiculously stupid. But let’s not get distracted cause I’m not talking about that here!
Because of the fact that they’d be out of network, the ortho team made the obvious suggestion that I move the knee replacement a little earlier, In fact it was planned for June the 22nd. This did not upset me too much as you may have seen that some corrupt Italians have organized a soccer tournament that would give me plenty of games on TV to be entertained by while I was lying around recovering.
Sadly one of the pretests I had on June 16th was an echocardiogram that indicated that my heart valve was in even worse shape than it had been earlier in the year. After quite a lot of back and forth between the cardiac team, the knee team and the anesthesia team, everyone agreed to put off the knee surgery until we figured out my heart.
Meanwhile sometime late on Thursday the 25th or early on Friday the 26th of June, UC Health and Cigna stepped back from the brink and came to an agreement that will continue the UC system being in Cigna’s network.
Which all brings me to July 6th when I received a letter from Cigna
This is the one that contains more stupidity per square inch than any other communication I’ve had from an insurance company.
It didn’t take that long during intern year to realize that something was wrong. As I signed so many orders that my signature, once proudly readable, began its gradual but clear progression towards more abstraction, I eventually started to wonder just how much all of these tests were actually costing my patients. After all, once you start checking boxes on an order sheet, the “calcium/phos/mag” just seems to roll off of the tongue. However, not just how much was this “costing” patients financially, but also in potential risks, harms and adverse effects.
I particularly remember being bothered when told by an Emergency Room attending physician that I had to get the Head CT on my 28-year-old male patient presenting with a benign-sounding headache and a normal physical examination, “unless you could go in there and tell him that you personally can guarantee him with 100% certainty that he does not have something bad like a brain tumor.” This did not seem like a fair bar to hop, particularly having put the M.D. after my name a mere few months prior. So I scribbled my name on another form and with the whisk of my pen subjected this patient to a normal CT head examination, saddling this young man with a significant amount of radiation and a hospital bill that now included an approximately $2,500 imaging charge. Nobody seemed to flinch, but it got me thinking.
Dean Jameson, Trustees, Faculty, Family and Friends, and most of all, Graduates of the Class of 2017:
Standing before you on this wonderful day, seeing all the proud parents and significant others, I can’t help but think about my father. My dad didn’t go to college; he joined the Air Force right after high school, then entered the family business, which manufactured women’s clothing. He did reasonably well, and my folks ended up moving to a New York City suburb, where I grew up.
There were a lot of professionals in the neighborhood, but my dad admired the doctors the most. He was even a little envious of them. This became obvious on weekend evenings when he’d get dressed to go out to a neighborhood party. He’d look perfectly fine – slacks, collared shirt, maybe a sweater. But there was one thing out of place: he’d be wearing our garage door opener on his belt. “Dad, what exactly are you doing?” I would ask, somewhat mortified.
“There’ll be lots of doctors at the party tonight,” he’d reply. “They all have beepers, I have nothing.” The strangest part was when the party was next door, the garage door would sometimes go up and down, as dad showed off his “beeper.”
Much has been made of Mark Cuban’s medical knowledge since he tweeted, “If you can afford to have your blood tested for everything available, do it quarterly so you have a baseline of your own personal health”. Charles Ornstein shared the tweet and many physicians and others, myself included, weighed in on the costs and potential for harm from unnecessary testing.
I’ll admit that, when I tweeted to him, I expected Cuban to agree. But he didn’t. In fact, he grew increasingly resistant. I stopped responding when he announced that the opposition to his idea his had convinced him he needed to take his proselytizing to his TV show.
Instead of poking the sore, I began to wonder about the origins of Cuban’s conviction. I remembered that he is not alone in wanting tests that clinicians who worry about value, cost, and harm think he shouldn’t have.
But where do these attitudes come from? Is it possible that clinicians are contributing in any way to this situation? Quite the contrary: most Americans want tests, even when you tell them that nothing can be done with the information. Furthermore, Americans are more convinced of the benefits of tests like mammograms than people in other countries, and then go out and get more of them.
I think that we are. My team has studied why patients get so many electively placed coronary stents, when cardiologists readily admit that randomized trials have demonstrated that there are few situations in which such stents improve survival or reduce the risk of heart attacks.
Studies of the beliefs of patients who have just received an electively placed stent give a big clue: 80% thought stenting would reduce their risk of death, even though their cardiologists knew that this was not the case.
That Epic would find itself labeled a monopoly is in itself an extraordinary turn of events. In 2000, after 21 years in business, the company had only 400 employees and 73 clients, and did not appear on a list of the top 20 hospital EHR vendors. Its big break came in 2003, when the 8 million–member Kaiser Permanente system selected Epic over two far better known competitors, IBM and Cerner. The cost to build Kaiser’s electronic health record: $4 billion.
Today, Epic has 8,100 employees, 315 clients, and yearly revenues of approximately $2 billion. The system is now deployed in 9 of the US News & World Report’s “Top 10” hospitals. In 2014, the company estimated that 173 million people (54 percent of the U.S. population) had at least some medical information in an Epic electronic record.
Epic Founder and CEO Judy Faulkner’s vision, built on several central tenets, has been vindicated many times over. The first principle was that the winning EHR vendor would be the one that solved the most problems for its customers.
While Apple’s App Store has made a modular environment seem feasible and even desirable, most healthcare decision makers want a single product that does everything they need right out of the box (physician notes, nursing notes, drug ordering and dispensing, billing, compliance, and population health) and does those things everywhere, from the newborn nursery to the urology clinic to the ICU.
The growth in business cases for new models of healthcare delivery and integration of digital health technology is reaching the point of convergence — creating powerful synergies where there was once only data silos and skepticism.
We have not quite achieved this synergy yet, but opportunities emerging in 2015 will move the industry much closer to the long-awaited initiatives in connected, value-based care.
Individuals are constantly hyper-connected to a variety of technology networks and devices. Wearables will continue to enter the market, but their features and focus will go well beyond fitness. Even the devices entering the market now are more sophisticated than ever before. Some are now equipped with tools like muscle activity tracking, EEG, breath monitoring, and UV light measurement.
It will be fascinating to watch how consumer electronics, wearables, and clinical devices continue to merge and take new forms. Some particularly interesting examples will be in the categories of digital tattoos, implantable devices, and smart lenses.
As the adoption of wearables continues to grow, we will continue to see more value placed on accessing digital health data by healthcare and wellness organizations. This will be especially important as healthcare shifts towards value-based models of care. The need to gain access to the actionable data on connected devices will only grow as innovation creates more complex technologies in the market.
You’re a loyal THCB reader. You have a symptom. You Google it. One of the first three hits will be an entry about the symptom or an associated condition on Wikipedia.
As an informed lay person, you wonder, “How accurate is Wikipedia for medical information?”
You’ve always been a little skeptical of Wikipedia, but over the years you’ve found it more and more reliable for celebrity tidbits (e.g. “How old is Jane Lynch?” or “What was the name of that guy in “Crash?”) and sports trivia (“How many Super Bowls have the Minnesota Vikings lost?”).
In fact, it’s become quite useful for understanding geopolitics, ancient and recent history, and helping explain science topics (Higgs Boson, anyone?).
So why not medicine?
We in academic medicine look down our noses at Wikipedia. “Show us original texts,” we harrumph. “Where does the original data come from?” we ask our residents and students.
Just like high schoolers and college kids are warned NOT to use Wikipedia as a research tool, medical professors hold the site lowly in regard to seriousness of purpose.
Well, it’s time to accept reality.
We all use it, whether we admit it or not. Some of us a lot. The good news is, Wikipedia’s going to get even better in the medical realm.
