Track 01 : Bigger Decisions Than I Wanted to Make

I remember the bend in my cardiologist’s knees as he sank onto the black stool across from the echo bed. For some reason, at that moment, I noticed two things. He was too tall for the stool’s height, and something in his posture seemed even more anxious than the day 5 years ago, when he’d very seriously instructed me not to get Covid-19.

Here we sat in the same exam room, my mom was probably sitting in the almost the same guest chair, we were all in the same cold sterile hospital air, the same slightly speckled tile floors, with same stiff white sheets over the echo bed, but when the doctor walked in, everything felt different.

“I saw you in the hall earlier, and I’ve been dreading this appointment,” he said.

I just sat in confused silence for a moment, and his face looked like he was trying to ask a question, even though there really wasn’t one.

“I don’t have good news, today,” he said. “Your echo shows that your valve has gotten worse, and your aorta is very dilated. The heart is very good at compensating for leaks like yours, and it’s done a good job for a long time, but that has put extra strain on your aorta, and things are wearing out. You’re going to need open heart surgery relatively soon.”

A wave of relief washed over me, and part of me wanted to laugh. The other part of me wanted to comfort my doctor from the weight of delivering the “bad news.”We’d talked about the looming surgery on my last visit. There wasn’t a date set, but I knew it was coming. I’d known for years it was coming. In fact, it was about 17 years overdue based on my medical team’s original predictions, but over the last 2 years in particular, we’d even started talking about realistic timelines. Open heart surgery, I suppose, is never good news. I was, in fact, not remotely looking forward to it. In a couple hours, immense fear was going to set in, even. But I was not at all surprised.

“Oh,” I said, “How soon?”

It was illogical to be too disappointed, after all. Or to expect much more time. When a valve that was supposed to be replaced before you graduated high school is still letting you live a nearly normal life at 34 years old, you just don’t gripe about 17 extra years. You try not to gripe about any of the miracles life has inexplicably offered you. Gratitude becomes a pretty hefty shield against unpleasant realities.

“Well, we don’t have to do it before the school year is over, but we could do it any time now. We’ll do a follow up in six months, just in case, but we don’t want to wait until next school year unless you want to take time off right at the beginning.”

I looked at my mom (who has come to pretty much every one of my cardiology appointments with me since I was a baby) as if she was in charge of scheduling my appointments and making my medical decisions like when I was child. Whether her face or voice told me it had to be my decision, I don’t know, but that was the response.

We’d already discussed the logistics. Prepping for a substitute teacher and open heart surgery just sounded like a lot. Besides, summer was mostly shot either way.

“Let’s do it at the beginning of summer,” I said.

“Of course, it will depend on the surgeons’ schedules,” my cardiologist added, “but I wouldn’t want to wait much longer than that anyway. And you don’t want to take more time off work than necessary.”

“How long will recovery take?” I said.

“Six to eight weeks,” he said, “to be up and functioning again.”

Anyone who has had any significant surgery, knows that that’s almost a lie. When doctors say “functioning,” they mean that you will be mostly capable of doing every day tasks again. They don’t mean that those tasks won’t drain you, that you can do as many of them as before, or that your body is going to handle those tasks without punishing you for it later. They just mean that you will be physically capable of taking care of your basic needs again. But in the 25 years since my last open-heart surgery I had forgotten that.

Six to eight week recovery, I thought. Great. If I have it at the beginning of summer, that will even give me a week or so of extra summer rest before I go back to work. And I’ll have a lot of down time to prep.

My cardiologist interrupted my grand summer planning by introducing my options for valves. Mechanical valves would last longer but require anticoagulants and make pregnancies riskier.

“But if you want to have kids in the next couple years,” he said, “we can do a tissue valve. Or we can still do the mechanical valve. I get patients through pregnancies on blood thinners all the time. It’s manageable. You just need to know it may be rough, and there’s an increased bleeding risk. You absolutely have to work closely with us, but you’re going to have to work with us during pregnancy anyway.”

“But if I’m not getting pregnant, the mechanical valve is the way to go?”

“That’s still up to you. There are pros and cons for both. A tissue valve may require anti-rejection medications. A mechanical valve makes a little noise. You’re probably going to end up on medication either way. Tissue valves make it 5 to 10 years, but you know first hand that sometimes they make it longer. We also have to consider that it’s your third surgery, though, and every time we open you up things get a little more complicated, and those valves may not last as long.”

“So what do you recommend?” my mom chimed in from her seat in the chair against the wall. Mom comes with me to all my cardiology appointments, and on days with this kind of news, a second set of ears is never a bad thing.

“If it were me, I would do the mechanical valve. They’re very good now. Most people don’t mind the noise. They last a long time—”

“How long is a long time?” mom said.

“Well medically we say 20 to 30 years, but that’s because we have to place limits based on how early they could wear out. Realistically, most likely, she will have it until she dies, and I don’t mean that she will die in 20 to 30 years. Something would have to go terribly wrong for the valve not to outlast her. It can. People can get infections or hypothetically something could malfunction, but statistically it’s unlikely. There are always risks, but there are risks with tissue valves, too. The newest mechanical ones, they’re called OnX valves, they require very low doses of warfarin. At first, they thought they could just use Aspirin, but the case studies found the clotting risk was too inconsistent. Warfarin or Coumadin is now the gold standard for mechanical valves, but you won’t have to take high doses or thin your blood too much. Pregnancy is a real consideration, though. The bleeding risk increases, especially during delivery.”

“If I were engaged right now,” I said, “or felt certain I’d be married in the next year or two, it would definitely make this a more difficult decision…“ I almost wished it were a more difficult decision. That I had some reason to think harder about it.

“…but in my current situation I can’t imagine that I’ll be married, let alone pregnant before I need this surgery. I want kids, but realistically, I don’t think we can make that a main factor in the valve I choose.”

The words came out of my mouth as if I’d thought about them a lot, and maybe subconsciously, I had, but in this moment I realized I was making bigger decisions than I wanted to have to make. Decisions that forced me to face realities that had seemed far disconnected from my heart, but life has a way of connecting dots we’d rather not.

“You are both taking this really well,” the doctor looked at me and then my mom.

“Well, we’ve known this was coming. She’s done really well up to this point,” mom said.

“We talked about it last time I was here. I’ve been thinking about it a lot,” I said.

“She’s pretty nervous,” mom said.

“I am,” I said, “but it has to be done, and I keep reminding myself I’ll die if we don’t.”

“I never like giving this kind of news,” the doctor said, shaking his head. “There are always risks, but again, statistically speaking the odds are good. Great actually. The surgeons are great. Heart surgery is not what it used to be. This is a big one, and it’s your third one, so that makes it more complex, but we’ve kept an eye on it, and we’re catching it in time, and I think it’s going to be good.”

Some people think that most doctors are arrogant and out of touch. Maybe I’ve been lucky with mine, or maybe my life has just forced me to recognize that good doctors walk a fine line between empathy and confidence because patients do need understanding and good bedside manner from their doctors. But they also need truth, perspective, and something to trust. Doctors, in my opinion, should be far more confident than concerned, but I’ve been lucky, more often than not, to have doctors (and surgeons) just like my cardiologist. They strike the balance between empathy for my worries and confidence that they won’t come to fruition.

When it’s your heart on the line, faith becomes another decision bigger than you wanted to make, but the alternatives leave you in much more dangerous places.

So you have to put your faith in the few things and people you know you can trust, and you take the next steps.

It’s almost not a choice at all. Almost.