Heather’s Story

Site created on January 11, 2019

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Newest Update

Journal entry by Matt Hooper

Good afternoon from White Rock Coffee, near the corner of Royal and Preston and mere steps from my front door here in North Dallas. 

It's been a little more than two weeks since Heather's surgery, a little less than two weeks since she's been home. Things are going well. Recovery continues apace. Heather is energetic, moving around more-or-less normally, sleeping well, eating well, feeling good. Pain is mostly under control – always a minor miracle. Many of the issues that we dealt with earlier this year – unrelenting battles with discomfort, sleep, nausea, lack of appetite and so forth, have been non-issues this time around. We give thanks for that. 

Last night my company (Saxony Partners) officially opened its new office location, just in time to kickoff the fourth quarter of the fiscal year. Heather insisted on attending and showed up wearing a gorgeous floor-length navy dress – prompting our managing partner to remark, "She's got swag" (true, of course). Based on the morning-after reviews I got today from my colleagues, I'm fairly certain that Saxony would accept a straight-up marketing/communications trade – me for Heather. 

On the issues and complications front, there's not much to report. Recent bloodwork indicates some inconsistency with her thyroid-stimulating hormone numbers (they're high). But the endocrinologist assigned to her doesn't seem too put out by the news – it could be a reaction to the stress of surgery. She's recovering from a bout of phlebitis (the result of one IV too many) – but that has improved as the week has progressed. Everything else seems to be on target, as far as the white coats are concerned.

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Speaking of, we spent some time with Dr. Aldo Rafael on Thursday and got the full report of what went down in the operating room two Wednesdays ago – the details of which were wilder than I imagined. 

Let's start with a reminder of how a ventricular assist device works. There's not much difference between a VAD and a sump pump or bilge pump. A motor spins a rotor to create suction, the suction pulls fluid into a pipe, which then transports that fluid to some other location. In the case of the LVAD, the pump is attached to the lowest point of the left ventricle, pulls blood from the ventricle into an outflow cannula, which is grafted into the aorta at a point just north of the aortic valve.

North of the aortic valve – bypassing the valve entirely. This is an important fact – remember it. 

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Now, if you'll recall, Heather had three life-saving interventions in Atlanta over the course of eight days in January of this year.

First – her aortic valve suffered a catastrophic failure, causing a major heart attack (or series of heart attacks) that left her heart in a severely weakened state. The immediate fix was to perform open heart surgery to replace the aortic valve. At the time, the best option was a tissue valve (donated by an still-anonymous cow) – because those valves (unlike their mechanical cousins) do not require ongoing support from blood thinners. The assumption was that a 29-year-old woman would want to retain child-bearing viability, something you can't do while being treated with blood thinners. We could have knocked that assumption down easily during a pre-surgery consult – but this was an emergency situation and consultation wasn't an option. 

Now, there are two things you should know about tissue valves. They don't last very long. And if you don't use them, you lose them. Without regular blood flow through it, the valve's leaflets can fuse together and create an impregnable blood barrier. 

Second – the valve replacement was successful, but the damage to the heart was extensive enough to render the left atrium and ventricle relatively useless. The immediate fix was to connect Heather to a phone booth-sized device called ECMO – Extracorporeal Membrane Oxygenation. This machine – which has a dismal 50-50 survival rate – is akin to a dialysis-slash-heart-and-lung-machine – giant cannulas are inserted into the femoral vessels and fed into the right and left heart. De-oxygenated blood is pulled into the machine, oxygenated, and pushed back into the body. The most concerning side effect? Blood clots. 

Sure enough – one week later, a profoundly large grouping of blood clots was discovered lurking inside Heather's left ventricle. The decision was made to try the third life-saving intervention – implantation of the LVAD. 

That's how we got to where we were a few weeks ago. Heather now had an LVAD and a new aortic tissue valve. Her heart, largely recovered from the shock of her aortic valve malfunction, was showing clear signs of normal functionality – to the extent that she was cleared to undergo an exceedingly rare procedure – LVAD explantation. 

There are not many LVADs out in the wild. The most prolific VAD device on the market is the HeartMate II, and it has only been implanted about 22,000 times (as of 2018). The Heartmate III – the version Heather received – was cleared for implantation in October 2018. There couldn't have been more than a few dozen Heartmate III patients in the world by the time Heather received hers in January 2019. 

Explantation is even more rare – only between 1 and 5 percent of LVAD patients will ever recover heart function to the point that they can be weaned off the device. Most LVADs are removed only when a new heart is ready for transplant. If you're playing the odds, you wouldn't bet on something that happens only 1 to 5 percent of the time. But Heather wound up in that exclusive cohort, nonetheless.

There's no playbook for explanting an LVAD. There are only a few thousand new VAD patients each year, and only a tiny, tiny fraction will ever recover – so, of course there's no playbook. Dr. Amarinder Bindra, Heather's cardiologist at Baylor University Medical Center, read every white paper and journal article he could get his hands on. He polled colleagues nationwide. But ultimately he had to rely on his own trial and error. Turn the VAD pump speed down a little each month, hit Heather with some cutting-edge pharmacology, double-down on an aggressive cardiac rehab program, and hope for the best.

It worked. 

–––

Dr. Aldo Rafael graduated from the San Fernando Medical School in Lima, Peru. He completed his first residency in Lima at the Dos de Mayo National Hospital (the name refers to the Battle of Callao, a skirmish between Spanish and Peruvian forces that took place on May 2, 1866). He emigrated from Peru to the United States and began another residency, this time at the renouned Cleveland Clinic.

Dr. Rafael had performed the only other explantation of a Heartmate III at Baylor just a few weeks prior to Heather's operation. He is the top cutter in the cardiology department at Baylor's 46-block Downtown Dallas hospital – and he is the hospital's No. 1 expert on ventricular assist devices. The week leading up to Heather's surgery was busy for Dr. Rafael – he performed six heart transplants. 

The plan for explantation, from Dr. Rafael's perspective, was pretty simple. Ten steps.

One, make a three-to-four inch incision between the ribs and spread those ribs apart.

Two, cut into the groin and graft the heart/lung cannulas into the femoral vessels.

Three, wean the speed of the LVAD down to 3,000 rpm.

Four, clamp the outflow cannula leading from the LVAD to the aorta.

Five, pop the pump out of the chest.

Six, cut out the outflow cannula.

Seven, rip out the LVAD power cord.

Eight, plug the hole in the ventricle with a bespoke plug that Rafael fashioned himself.

Nine, disconnect the heart/lung machine.

Ten, close the wounds and send her to the ICU for recovery.

–––

The incision was made just before 8:30 a.m., in the area just above the racquetball-sized pump. Ribs were spread apart. The heart/lung machine was activated. 

Slowly, Rafael began tapering down the LVAD motor. Four thousand, 3900, 3800, and so forth until the speed bottomed out at 3000 r.p.m. Everyone in the room noticed that, as the speed of the LVAD decreased, so did Heather's blood pressure. Nevertheless, everything remained more-or-less on track. At about 11:20 a.m. – a nurse phoned me from the operating room to tell me that the LVAD was ready to come out. It would take about 90 more minutes. 

Before he severed the driveline, Dr. Rafael decided that he was concerned enough about Heather's blood pressure to perform one final test: he would clamp off as much external heart support as he could and give Heather's heart 100 percent of the workload for the first time since early January. The moment those clamps went on, disaster struck.

Immediately, Heather's heart inflated like a football and her blood pressure bottomed out. Blood was coming into the heart, but it was not moving out. Rafael quickly removed his clamps. He called for an emergency consult with a valve expert.

Remember, there are two things about tissue valves – they don't last long, and you lose it if you don't use it. Remember also that the job of the LVAD is to bypass the aortic valve completely and eject blood from the left ventricle directly into the vessel and out to the body. Indeed, the valve leaflets inside that bovine valve had fused together completely. It was completely, utterly useless. 

At about 12:20 p.m., Rafael and members of the surgery team walked urgently into the waiting room and found me sitting around a table with Andy and Megan Stoker, Carol Hay, and Rachel Ratcliff. The looks on their faces said it all.

"I was just beginning to take the LVAD out," Dr. Rafael began – and it hit me that I'd really rather have been dead than hear the end of that sentence. All of the feeling left my extremities, my hands and my feet went numb. My vision narrowed into a tight, dark cylinder. I bowed my head and took in the news – and was briefed on the two options we had.

One option was to leave the LVAD where it was, close the wound, and then take her into the TAVR (transcatheter aortic valve replacement) suite the next day. There, they would replace the valve in a minimally-invasive way, then go straight back to the operating room to remove the LVAD. Minimally-invasive, yes – but much more dangerous considering the risks of infection, bleeding, and that the TAVR procedure wouldn't work. 

Second option: take the LVAD out, put Heather on the heart/lung machine, flay her ribcage wide open for the third time this year, replace the valve with a mechanical one and do it the old-fashioned way. This would extend the surgery by another six hours, at least – but the LVAD would come out.

I don't know how long it took me to make the decision – you'd have to ask Rachel, Andy, Megan, or Carol to be sure. But I knew, and I told them, that there was no way Heather could wake up attached to an LVAD. It would destroy her; it would destroy me.

So, open her up. Fix the valve. Take that damn machine out. I don't care about blood thinners. We couldn't care less about child-bearing as it is. Just go get that hunk of metal out of her body. The doctors filed out and returned to the operating suite. I was left to deal with the aftermath of the decision. 

When Rafael returned to the operating suite and Heather's sternum was sawed in two, the full measure of the aortic valve could finally be taken. It was an awful mess – covered in a thick tangle of scar tissue. Going in the old-fashioned way – that was absolutely the right call.

Rafael cleaned away the detritus of the tissue valve. In its place he sewed a new On-X mechanical heart valve – size 19. The LVAD was removed without complication. The heart/lung machine was clamped off, and the heart lub-dubbed back to normal. There was minimal bleeding. The valve worked swimmingly. Heather's blood pressure was stable. Both incisions – the four-inch cut over the ribs and the seven-inch cut above the sternum – were closed. Sometime around 7 p.m., Heather was wheeled into room 420 of the cardiothoracic intensive care unit. 

At 2:30 a.m., she woke up and wrote down a series of questions for her nurse. "Did they take [the LVAD] out?" "Where are my incisions?" "Can I have water?" "When will Matt arrive?" "Did it all go as [planned]?"

–––

The things that I couldn't figure out until the meeting with Dr. Rafael last Thursday: Why couldn't we see the fused aortic valve on the dozen or so echocardiograms Heather's had since the beginning of the year? And, if we've been weaning her off the LVAD for the past six months, how can you explain her utter dependence upon that machine...considering the fusion of the aorta? 

To answer the first question: there's just a lot you can't see in an echocardiogram, unfortunately – including vivid details from inside the aortic valve. It wasn't from lack of effort – Dr. Bindra called out the possibility of her aortic valve underperforming from the first week in clinic at Baylor, and he was desperate to get any kind of clear picture from it on each ECC performed this year. But until Rafael clamped those cannula, no one knew the mess that existed inside that garden hose-sized tube. 

On the question of how Heather survived being weaned off a machine that she depended on for her very existence? Well, that's a good one. Turns out, her heart was, indeed, getting much stronger as time marched on. It was presumably pumping blood out of the ventricle, toward the ascending aorta – where it met an impenetrable wall inside the valve. I think it was Blaise Pascal who determined that fluid under high pressure will move until it finds an area of low pressure – so it was with Heather's blood. Stymied by the aortic valve, the blood routed back into the ventricle, where the heartbeat pushed it out through the LVAD, into the outflow cannula, and into the post-valve portion of the aorta. Heather's life depended upon the LVAD infrastructure, if not the pump itself. She needed that outflow cannula, desperately. Had she experienced any – any – complication with that LVAD system whatsoever, she'd have lost the ability to pump blood. That's – well, that's a fatal condition.

The timing of this surgery, which we originally thought was rushed, turned out to be perfect. 

–––

By my count, Heather has legitimately cheated death five times this year. The first night in Atlanta, she more-or-less died on the operating table. One. The next seven days on ECMO, with its coin-flip survival rate. Two. A left ventricle full of blood clots. Three. The very dangerous and accidental combination of medication she was taking in the late spring, unbeknownst to anyone on her medical team. Four. And, finally, her fused aortic valve. Five.

Along the way, there have been lifesavers with perfect timing. Morris Brown. David Dean. The cardiac nurses at Piedmont in Atlanta. Amarinder Bindra. The cardiac rehab team and LVAD coordinators at Baylor. Aldo Rafael. 

Hell of a story. Hell of a year. 

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