Wednesday, November 11, 2020

Matters Of The Heart

With a brand-new, long-awaited baby at home, my heart was full.

It was also in trouble. 

Back in 2009, I had a cholesterol lipid panel done. My numbers came back high. The doctor repeated the test three times, thinking it was a fluke, but they didn't budge. She recommended I see a specialist. I was 28 at the time. And a marathon runner! If anything about me was healthy, it had to be my heart. So I ignored her advice.

Fast forward to 2020. My baby had given me new motivation to take better care of myself. I also had excellent health insurance. There was no reason not to follow up on my high cholesterol, other than fear.

One thing that pregnancy does to most women is raise their cholesterol – sometimes astronomically. I had asked Dr. Baby-Maker if we should check it while I was pregnant, and she said no, because there was nothing we could do about it while I was pregnant anyway. She told me to wait until at least six weeks postpartum. So I did. Then I found a top-tier cardiologist, scheduled an appointment, and had my blood drawn. My hope was that somehow over the past 11 years, the problem would have corrected itself.

Yeah, no. What came back was terrifying.

Normal total cholesterol is under 200. 

Mine was 454.

Normal LDL (or “bad”) cholesterol is under 130. 

Mine was 330.

These numbers were not only abysmal, they were worse than all my previous cholesterol readings.

“You’re in the top one-half percent of people with high cholesterol,” said the cardiologist, who we’ll call Dr. Cardio. 

This wasn’t my fault, though. Dr. Cardio explained that I had Familial Hypercholesterolemia (FH). It’s genetic and isn’t influenced by exercise or diet, which is a shame because I’m maniacal about the former and pretty good about the latter. But I didn't need to tell Dr. Cardio that. He could tell from my HDL (“good”) cholesterol levels that I was working out plenty and my triglycerides indicated that my diet was relatively healthy.

Regardless of what caused my high cholesterol, treatment was crucial. Untreated women with FH have a 30 percent risk of a fatal heart attack by age 60. Dr. Cardio said he was putting me on statins, STAT. The highest dose of Crestor, to be exact.

“You want to be around for your kids,” he said. “The only thing about Crestor is that you can’t get pregnant on it.”

Cue gut thump. My itty bitty, barely begun dream of maybe, just maybe having one more kid got squashed just like that.

“But what if I wanted to get pregnant again, you know, in the future?” I asked (as if I were 29 rather 39 and had all the future in the world). “Would going off the meds to have a baby put me at risk of a heart attack or a stroke?”

“No,” he said. “You’d be OK for nine months. But I wouldn’t wait more than three months postpartum to get back on it, so you’d have to stop breastfeeding at that point.”

As I’d learned with my new baby, not breastfeeding was not a deal-breaker for me. Still, until I got my numbers down, pursuing another pregnancy would be reckless. Dr. Cardio said we’d redo the bloodwork in three months and talk again.

“Your daughters should get their cholesterol tested, too,” he said. “There’s a 50-50 chance they have FH.”

He recommended I check out the FH Foundation for more information. I did, and ended up in a Facebook group affiliated with the foundation. I was hoping to get some support around my diagnosis and maybe some book recommendations or diet advice. What I got instead was a lot of scary stories. There were posts from people who’d had heart attacks, a pic of a woman who’d just had surgery, women who found out their children had high cholesterol even though they were still in grade school, and plenty of complaints about statins and their side effects.

I hadn’t felt too worried after talking to Dr. Cardio, but after scrolling through those Facebook posts, I felt like I had been given a death sentence.

In an introductory post, I explained that I’d just been diagnosed and that I was supposed to start taking Crestor. “I’m afraid of taking the drug but I’m more afraid of what might happen if I don’t take it,” I wrote through tears. I asked for encouragement and success stories. Then I closed my laptop because I couldn’t dwell anymore on my mortality.

In addition to feeling scared and sad, I was also mad – at myself for ignoring the high cholesterol a decade ago, at my family for not informing me of a potentially fatal genetic condition, at my previous doctors for not impressing upon me how serious high cholesterol could be (and that no amount of running or clean eating could lower mine). 

I tried talking to my husband about the diagnosis but he was unhelpful. He refused to accept reality and was skeptical of the medical establishment.

“I just don’t understand how someone who exercises as much as you do could have high cholesterol,” he said. “It just isn’t fair!”

The night of my diagnosis, I went for a walk with the baby and watched some dumb TV until she fell asleep. Staying off the internet definitely helped keep the fear at bay. 

“This might be a case where too much information hurts more than it helps,” I wrote in my journal. “But I want to be around to see my baby grow up. I don’t want to be dead mom.”

I started taking Crestor every night, and thankfully had no side effects. While my body seemed to be adapting fine to the diagnosis, my mind was not. I became obsessed with reading about unexpected deaths online – especially of young women, pregnant women, and new moms. There was no shortage of these stories, either. I wasn’t sure if my radar was more attuned to them or if there actually was a rash of these kinds of deaths happening. Either way, I couldn’t stop clicking. An actress drowned while on a boating excursion with her 4-year-old son, a 24-year-old YouTube star who was 8-months pregnant died from a heart attack, a 57-year-old celebrity mom died of breast cancer. Locally, a 39-year-old woman who was 8-months pregnant died in a car crash. Another pregnant woman was shot.

“I do not want to be one of these tragic stories,” I wrote in my journal. “I want to have a boring death at a very old age.”

Though Dr. Cardio said my diet didn’t make a bit of difference in lowering my cholesterol, I asked to speak with his clinic’s nutritionist anyway. She was an elderly, kind lady who went over everything I ate in an average day on the phone with me. I’ll admit, I fudged the numbers a bit when it came to my chocolate consumption and my potato consumption (by which I mean waffle fries and tater tots). “Well, you have three kids,” she said regarding the latter. “Yeah,” I should have responded, “but they don’t eat that garbage.”

Even with those dietary flaws, she told me I was the healthiest eater she had spoken to in a long time. Still, she had some suggestions: eat only one egg yolk per day, add fish twice a week, eat one serving of tree nuts daily, and incorporate more whole grains into my diet. Little by little, I made every one of her suggested changes. I also switched from peanut butter to almond butter, swapped potatoes roasted in olive oil for processed potato products, and cut out red meat for good measure.

I told my dad via email about my diagnosis. He nonchalantly said he'd had high cholesterol for 20 years and had tried various medications. But his doctor had never mentioned FH. My dad said it must have come from my mom's side of the family. So one day, when my mom came over to get my teens for lunch, I asked if she had high cholesterol.

“Yup. I’m on Lipitor.”

“Hello! You could have told me!” I thought.

“Once you get to a certain age, everyone has high cholesterol,” she continued. “Mine was borderline.” Then she casually mentioned that her dad had had a few strokes and “maybe those were caused by high cholesterol.”

“Where has this information been my whole life?!” I wanted to scream.

“I just found out that my cholesterol is ridiculously high,” I told her.

“Bummer,” she said.

After my mom left with my teens, I turned to my husband. “I love how my family is like, ‘Oh, yeah, I have high cholesterol. No big deal!’ It’s not like it can kill you or anything!”

Then I started crying because my family’s lack of communication, which has always been just an annoying trait, could, in this case, have been lethal.

“Whatever,” I said, drying my tears. “It’s fine. I guess I’m the only one worried about dying!”

Unable to get the kind of acknowledgment or comfort I needed from my family, I scheduled a virtual session with my therapist Shania. Among the helpful things she said was that I was grieving life as I formerly knew it. She also said that sometimes, when people get discouraging information about their health, it prompts them to act on things they've been putting off.

“Is there something you want to do?” Shania asked.

I had been toying with the idea of starting a blog about how my new baby came to be. Shania thought a blog was a good idea, that it would be helpful for me to process my feelings about infertility.

“Take care of yourself and love your baby,” Shania said in signing off.

It was exactly what I needed to hear.

After one of my teens was also diagnosed with FH (though not so severe that she needed medication yet), I started thinking a lot about genes. My new baby had dodged a bullet by not being genetically related to me. But whose genes did she have? Who did she share them with?

As I would soon discover, you can find anything – or anyone – on Facebook if you dig deep enough…

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