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Matthew Holt is the founder and publisher of The Health Care Blog and still writes regularly for the site and hosts the #THCBGang and #HealthInTwoPoint00 video shows/podcasts. He was co-founder of the Health 2.0 Conference and now also does advisory work mostly for health tech startups at his consulting firm SMACK.health.

Pre-Surgical Complications (Part 5)

By MATTHEW HOLT

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!

Matthew Holt is publisher of THCB

Pre-Surgical Complications (Part 4)

By MATTHEW HOLT

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

Getting in touch 

But while knowing this stuff may be simple, actually getting to speak to the people at these medical centers is way more complicated. First you have to set up the data.

I knew they would want to see my images. The good news was that although I couldn’t see any of the images in my UCSF MyChart account, there’s a number to call on the bottom of the reports if you want to “download the image” and a very nice tech was able to upload all my images to a website that I could see called AmbraHealth (now part of Intelrad) within a couple of hours. Now I can share them with other people similar to sharing a Google doc.

But that was the easiest part.

I will spare you the blow by blow account but for example it took a long time for the people in the office of the main investigator at Cedars to figure out who the person managing the trial was so they could put me in touch with her. After I finally got to leave her a message she rang me back. I played phone tag with her for about a week. I did end up getting her email and sending out a bunch of my image reports and then she went on vacation and I didn’t hear from her for two weeks. First contact to appointment took 6 weeks.

At the same time I was trying Stanford Cardiology in order to try to get an appointment with Dr Yeung. First time I called after about 10 mins on hold I was told that I needed to have a referral. (Even though I’m on PPO style plan that doesn’t need one). 

I pinged my long suffering PCP team at One Medical and asked them for a referral to talk to Dr Yeung which they sent out. A few days later I called the cardiology team at Stanford and eventually – I mean eventually, it was literally a 10 minute hold – they told me the referral wasn’t through yet. I asked if I could get them some images in advance, they said no. They were able to set me up on MyHealth which is their equivalent of the Epic’s MyChart. Funnily enough they had information on me from an emergency room visit I made there in the 1990s. But because I did not have an appointment set up yet I was not able to communicate using the messaging function on MyHealth. 

So I called back a few days later and after another seven or eight minute hold I was told that I had an appointment set up for me and it was on MyHealth. But bizarrely the referrals and visits are buried in the “billing” section of MyHealth and then the appointment was on a sub-menu! And of course even though I could see it there was no way to communicate about the appointment. 

This was even stranger as Stanford booked me both an echocardiogram and what’s called a CT angiogram which is a non-invasive angiogram using a CT machine. I had had both of these done at UCSF within the previous month.

Continue reading…

Pre-Surgical Complications (Part 3)

By MATTHEW HOLT

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

The first thing was to message the cardiac scheduling team to postpone the surgery set up for July, not least reason being because England was going to be in the World Cup final two days after that and I didn’t want to be in intensive care in case they weren’t showing the game. Yes, yes, I know Messi and the cheating FIFA refs made sure that sadly didn’t happen! 

I agreed with them to put a date on the calendar for September. But that didn’t stop a prep nurse calling me on Monday 29th June asking me about surgery on July 17th. She was most surprised to find that it wasn’t happening. Yet another time when the message didn’t quite get through.

Time to really figure out what this heart surgery involves. 

Essentially if I wasn’t watching soccer from late June onwards I was trying to figure out what was known about valve replacement surgery. It was actually hard to find out both what the data is regarding TAVRs and the varying ways that surgical valve replacement can be done. 

It turns out that going in through the chest bone, known as sternotomy, is the most usual way to do the surgical replacement of the heart valve but it’s not the only way. 

This discovery took me a lot of effort not only asking chatGPT and Claude about the process but also trying to figure out who does what. I also spent a lot of time asking for advice and honestly not getting much useful on the ValveReplacement SubReddit and looking on heartvalvesurgery.com, a website that seems to be sponsored by some surgeons and medical centers but is run by a patient called Adam Pick. I have been down the rabbit hole there and on YouTube and have more or less had to figure this out myself.

I was also reminded of the classic 1996 Fortune piece by then Intel CEO Andy Grove who was trying to figure out which approach to use to treat his prostate cancer. Basically he realized that the radiologists and the surgeons didn’t talk to each other and didn’t compare results, and he – the patient – had to figure it out from the rather poor data available, and talking to other patients on Compuserve! Well, it was 1996.

It turns out that there are several different options possibly available to me. But in terms of coordination and the patient journey, I’m not sure that we’ve come a long way since Andy Grove’s piece 30 years ago.

Continue reading…

Pre-Surgical Complications (Part 2)

By MATTHEW HOLT

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.

Continue reading…

Pre-Surgical Complications (Part 1)

By MATTHEW HOLT

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 will be a multi-parter!

Introduction and a decent bit of context

Last summer after a lot of back and forth I discovered that I had aortic stenosis. (I won’t replay the whole story of how the referral to the echocardiogram didn’t happen three times and therefore I nearly didn’t have the test and therefore never found out because I already have elsewhere) 

Amazingly this has nothing to do with my bad lifestyle. It’s an inherited heart disease in which the valve that governs the flow of blood between the two main chambers of your heart is starting to fail. Often that means people get very short of breath, start to faint or have severe chest pains but in my case I had none of that. What I did have was the measurement on an echocardiogram showing that my aortic stenosis was “severe” because I have what’s called a bicuspid aortic valve. This is a genetic defect that my father landed me with–well I’m blaming my father but who exactly knows as he’s dead!  

Essentially instead of having three leaves on the valve (like a Mercedes symbol) I have two and over time they’ve been steadily picking up more calcification and opening less. That means that more and more pressure is required from the heart to squeeze blood between the two chambers which is bad for the heart and by extension bad for me. That’s pretty strong agreement amongst cardiologists that if you can get this condition fixed before you become symptomatic it’s better than waiting. If you get symptomatic, it’s urgent and your chance of a heart attack and death becomes pretty high (like 25-50% a year!)

But of course it’s not that simple – either from the standpoint of getting it fixed or from the standpoint of how to get it fixed within the American health care system in all of its beauty. And you can expect it, as it’s me, to hear a lot about customer service, insurance, online access to information and of course interoperability. There might also be some AI thrown in for good measure!

Continue reading…

Matthew reviews ChatGPT Health

OpenAI just made ChatGPT Health generally available. This is their partnership with B.Well which allows you to bring your data from various EMRs into chatGPT. So I took it for a spin–Matthew Holt

Future of AI and Telehealth in primary care — Panel discussion

A couple of months back I hosted a conversation about my favorite topics, primary care and how telehealth and AI are changing it. The panel was Timm Schneider — Co-Founder & COO, Third Way Health, Jamie Reddick — COO, Graybill Medical Group & Erin Parks, Ph.D. — Co-Founder, Equip. The panel was at a tech heavy conference called TechCon Global in San Diego. Sadly the weather stopped us getting Matt Siegler from Akido Labs. We got into it about tech. incentives, specialty care and the role of AI in access and patient support–Matthew Holt

A ridiculously stupid letter from a health insurer

By MATTHEW HOLT

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.

Continue reading…

THCB Spotlight: Warris Bokhari, Claimable

One of the most interesting follows on Linkedin is Warris Bokhari from Claimable. He’s a British MD, who has had stints not only as a doc in the UK, but also as a health tech and health insurance exec in the US. But now he’s at war with the system, in particular working for patients to overturn denials from insurers using AI. But what exactly is the big picture aim, and how does Warris think that he’s going to fix American health care? We had quite the discussion and we sort of agree, but also don’t. Great discussion and transcript is below the video–Matthew Holt

This was such a great discussion I wanted to publish the transcript. The way I do that is to copy the Youtube generated transcript and drop it into Claude to smooth it over. I then read it and if I think it’s made an error, dip back into the video and listen to what actually happened and make a correction. This is all code therefore for me saying I think this transcript is pretty accurate but it might have a bunch of AI and human generated mistakes.

THCB Spotlight: Warris Bokhari, CEO of Claimable

Continue reading…

Ellipsis Health

Ellipsis Health has come a long way from its roots in detecting depression via vocal biomarkers. Sage, its charming voice AI agent, is now helping health plans and care management companies directly interact with patients and members, helping them with medication reminders, program recruitment, postop follow up and much more. I spoke with two of the brains behind Sage, COO Melissa McCool and CMO Mike Aratow. We got into what she does, what she’s good at and whether the world (or at least the health care world) needs specific voice AI specialists–Matthew Holt