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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 1Part 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.

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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.

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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.

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Actually, High-Tech Imaging Can Be High-Value Medicine

Lub-SHHRRR. Lub-SHHRRR. Lub-SHHRRR.

“Can you hear it?” she asked with a smile. The thin, pleasant lady seemed as struck by her murmur as I was. She was calm, perhaps amused by the clumsy second-year medical student listening to her heart.

“Yes, yes I can,” I replied, barely concealing my excitement. We had just learned about the heart sounds in class. This was my first time hearing anything abnormal on a patient, though it was impossible to miss—her heart was practically shouting at me.

Her mitral valve prolapse—a fairly common, benign condition—had progressed into acute mitral regurgitation. She came to the hospital short of breath because her faulty valve was letting blood back up into her lungs.

Though it was certainly frightening, surgery to fix the valve could wait a few weeks. But before doing anything, the surgical team wanted a picture of the blood vessels in her heart.

If the picture showed a blockage, the surgeons would have to perform two procedures: one to fix the blockage, and another to fix her valve. If her vessels were healthy, though, the surgeons could use a simpler approach focused just on her valve.

So she came to the interventional cardiologist who was teaching me for the day. Coronary angiograms are the interventionalists’ bread-and-butter procedure, done routinely to look for blockages and to guide stent placement. They involve snaking a catheter from the groin or arm through major blood vessels and up to the heart.

Under fluoroscopy (like a video X-ray), the cardiologists shoot contrast medium into the arteries, revealing the anatomy in exquisite detail.

The images are recorded electronically and accompanied by the cardiologist’s interpretation for anyone else who opens her medical record.

Though routine, these catheterizations aren’t trivial. Whenever you enter a blood vessel, you introduce the risk of bleeding and infection. Fluoroscopy is radiation, and contrast medium can damage the kidneys. And let’s not forget cost—reimbursing the interventional cardiologist, a radiology technician, and nursing staff costs Medicare almost $3,000 per case.

So I asked the cardiologist if such an invasive approach was really necessary.

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