Phil had an appointment with his cardiologist yesterday. It was a scheduled "stress echo," where they were planning on taking photos of his heart at rest, and then every three minutes, as they upped the speed on a treadmill. That didn’t happen.
Since Phil’s had a pacemaker (9 months ago), his ejection fraction (the percentage of blood pumped out of your heart) has trended down from 60 to 40 to, as of March, 23.5 percent. A normal LV ejection fraction is 55 to 70 percent. Once he hit 23.5, he had to wear the man vest–an external defibrillator that will shock him if his heart stops. He was put on medicines, that they’d hoped would work. Yesterday we learned that they haven’t.
The nurse put stickies on his chest and began an ultrasound of his heart. I sat there watching, thinking about the times I was on the table beside a nurse, when Phil was where I was, waiting to hear two heartbeats. Again, we were waiting to hear good news. It’s not as if we could interpret what we saw on the monitor. We weren’t trying to determine if there was a penis or three white lines this time. Instead, as we waited for the doctor to come in and read the screens, we tried to guess if his ejection fraction was up at 50 or 67.2. It was like playing roulette and putting all your chips on your favorite number.
The nurse excused herself for a minute. "I don’t like that," Phil said once she’d left.
"Well, if she saw that everything was looking good and fine, she would have just told me."
"Stop reading into things. You don’t know that. And you’ll know soon enough anyway."
"No, she went to get the doctor, so she can be the one to tell me I’m dying."
The nurse returned, then the doctor, who glanced over at the machines shaking her head. "Well, that’s not good," she said. "Not what we were hoping to see."
Not words you want to hear from your doctor.
"What, my ejection fraction isn’t any better?"
"No, it’s not. It’s actually worse."
"If you had to give it a percentage, what would you say it’s at?" I asked.
"Well, it’s not exact because his heart is just that funky, but I’m calling about 15 percent."
After more talking, Phil’s cardiologist left the room to go speak with Phil’s electrocardiologist, the one who’d put in Phil’s pacemaker. The nurse was unclamping wires from the stickies on Phil’s chest, when she began to cry. "I’m so sorry," she said as tears streamed down her face. "I was just so hopeful for you. I mean, I was sure it was going to go up. I told one of the other nurses that she’s got to give you the echo next time because maybe I’m just bad luck." She wiped her face and apologized again. "I need more sun," she said. "I’m so sorry for getting so emotional about this. I just really wanted it to be good news."
I know that sounds extremely unprofessional, but actually, it was comforting. She cared. It was touching. She knew it was inappropriate, apologized several times, but I understood. She was showing what I couldn’t.
Phil got dressed, and we were lead down the hall to meet with his electrocardiologist, an unscheduled appointment. "So, I’m guessing Dr. S. explained to you about what she saw, huh? She said your heart looks crappy. Well, not just crappy, REALLY crappy. She told me your ejection fraction is at 10 percent. So it looks like we’re going to have to put in a three-lead pacemaker with a built-in diffibulator, a device that’s 5x bulkier than the one in you now, and with leads that are far more apt to get dislodged. And there are risks involved that we need to go over." Pulling out the leads he has now could cause internal bleeding. And the new leads can fall out. If he bends a certain way, the third wire will brush up against something else, that will cause Phil to have hiccups. I can live with hiccups. These devices, he said, have a 7 percent chance of going off needlessly, meaning, it can electrocute Phil while he’s driving, holding one of the babies in the pool during swim lessons. And there’s nothing we can do about it. Even if he pulled that statistic out of mid-air… he wanted us to know about the risks. "Also," he said, "there’s a chance that putting in this third lead won’t help your ejection fraction at all. We can only hope." So that’s what we’re doing. We’re hoping. Despite all the risks, we have no choice. This is what he needs. Period.
Today Phil is working on scheduling his new operation (though I wonder if they refer to it as a ‘procedure’). Again, the new device will not cure him of the atrial fibrillation that’s causing even more damage… but it will save his life if his heart stops.
In March, Phil had an ablation, where his electrophysiologist Dr. Natale burned vessels in Phil’s heart, hoping to get Phil out of atrial fibrillation (which is damaging his heart). Natale got a lot of it, but said there was a portion of his heart that he couldn’t get to because "It was highly diseased" and thick, scarred, from all the a-fib perhaps, and that he’d risk perforating the heart if he pushed too hard to reach the vessels. Phil has a familial cardiomyopothy. The hope, though, was that the ablation would knock him out of a-fib or a-flutter, or any of his other arrhythmias. Combined with aggressive settings on his pacemaker, they were hoping to get him out of atrial-fibrillation, 100% of the time. But. But. But. But he’s still in atrial-fibrillation (which is causing more damage) about 50% of the time. I’m not sure about that percentage, but the truth is, for right now, that’s not even the most concerning part. An ejection fraction of 10% means of all the blood pumped into his heart, only 10% of it is leaving at a time. And given that Phil’s father died of a weak heart pump… it’s appropriate that they’re monitoring this situation as closely as they are. It’s also amazing that through all this, Phil is thankfully asymptomatic. That is, he’s never felt anything has been wrong with him. He isn’t in pain or short of breath. Short on patience… well, yeah, but that’s for another day. Smooch.
AS FOR A HEART TRANSPLANT: We haven’t discussed it. The doctors haven’t brought it up. I asked, and they said, we weren’t at that point yet. I don’t know how long a person is on a waitlist or how it’s prioritized. I also don’t know that we’re there yet. I do know that he doesn’t have familial amyloid cardiomyopathy (which would’ve prevented him from being a candidate for a transplant). So we’ll just jump from that bridge if we ever get there.