I got high in Yellowstone

  
Sometimes I can’t resist a cheeky post title. The truth is, I climbed a mountain in Yellowstone, and I never would have thought I could. Not three years ago, when I almost died, but really not even before that, when my heart was weak and had a congenital defect I didn’t even know about, in all the years before I almost died, when I thought I was just a wimp with no endurance.

But when I found out I’d get to go with my husband to a medical conference in the Tetons, I knew I wanted to try to push my limits. I’ve been in “normal cardiac function” range for the last two years, and I’ve been feeling stronger than my old wimpy self. How could I go to some of the most majestic wilderness in the world and not hike? And then, when I started researching hikes and saw that National Geographic had named a 7.2 mile “moderate” hike to the top of Mount Washburn as THE most legendary day hike in Yellowstone, I got a little crazy and decided we had to try it. I mean, they said it was “a day hike that carries the hiker directly into the park’s essence, where its iconic beauty and mystery are on vivid display,” and “this classic hike, a must-do that many do over and over as a virtual pilgrimage, is really about the views.” Who could resist that pitch, even with a bum heart?

I have to be honest, I really didn’t think I would make it up to the top. I figured I would try really hard, but thought I’d get really tired at some point and have to turn back. I warned my husband ahead of time that I wasn’t sure I could reach the top, and he said he was more than willing to just give it a shot.

The hike started out STEEP. It helped that it was through a beautiful meadow, so I had something pretty to look at. My refrain was basically “just keep swimming, just keep swimming.” I found a doable pace and stuck with it.

About 1/3 into the hike, I felt a twinge of pain in my hand and looked down to see my hands were getting REALLY swollen. Swelling is something I am supposed to watch for, so it concerned me a little. Lucky for me, my ER doctor husband is experienced in getting stuck rings off of people, so he helped me get my wedding rings off. He thought maybe the swelling was more to do with the way I was swinging my hands as I walked, plus the altitude, so I started wearing our daypack so I could hold onto the straps and keep my hands elevated. Soon the swelling was getting better.

I got high in Yellowstone: climbing a mountain with a congenital heart defect

We got closer and closer to the top, and I was getting shocked by how GOOD I felt. I mean, I felt like I was on the world’s most beautiful stairmaster with ankle weights on, but I wasn’t struggling to breathe, and my heart rate was a reasonable 110ish. Was I really going to do this? Climb the tallest mountain I’d ever attempted on the longest hike I’d ever done?

I got high in Yellowstone: climbing a mountain with a congenital heart defect

Yes, yes I was. We got to the top where it was windy and chilly. 10,243 feet isn’t something to sneeze at. I sat down in the fire tower at the top feeling shaky, slightly spent, and utterly thrilled. It wasn’t Everest, but to me, it was something like it– something I hadn’t thought I could do, but tried anyway and TOTALLY DID. I’m so glad I got to do this hike with Jon, because he has been on this journey with me all along, and he was just as proud as I was. He signed our names in the guest book and added “congenital heart defect and all!”

Things got slightly more interesting when we got SUPER close to a herd of mountain goats on our climb back down. We quickly realized we were between some adults and some babies and backed off and gave them space. Eventually they got off our path, but later, when we recounted the story to someone back at our lodge, he said he had heard of someone who was gored by a mountain goat and DIED. The idea that it would gore us hadn’t even crossed our minds. We thought at worst they’d head-butt us off the trail!

I got high in Yellowstone: climbing a mountain with a congenital heart defect

It was interesting to compare this hike with one we did together when we were dating, before I knew I had a heart defect. I struggled to hike to Hanging Lake, which was half as long as this climb. It’s strange to believe that I’m stronger now, having experienced serious heart failure, than I was before, when I didn’t know I had a heart defect, but it’s true. The medicines I’ve been on for the last three years have allowed my heart to get better, and at my last cardiology appointment, my doctor said, “your heart is STRONG.”

According to Wikipedia, author Elbert Hubbard who climbed Mount Washburn in 1914, wrote, “From the tip top of Mount Washburn you can see the world in much of its glory. It is an entrancing view. You are in love with living. You want to do more of if. You plan to do big things when you get down into the work again.” He’s right. I was in love with living, and so grateful that I get to do more of it. And now I have a new goal, a plan to do big things: I want to climb a “fourteener” some day.

I got high in Yellowstone: climbing a mountain with a congenital heart defect
I got high in Yellowstone: climbing a mountain with a congenital heart defect

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not something i wanted to pass on

If you’ve been reading for awhile, you’re familiar with the fact that I very nearly died after having my babies and later found out I had a previously undiagnosed heart defect, left ventricle non-compaction syndrome. Further genetic testing revealed that my heart defect was due to a genetic mutation, which led to genetic testing for both Etta and Claire, too. I really really hoped neither one got it, but there was a 50/50 chance they did.

It turns out those odds were exactly right. Etta has the mutation, Claire doesn’t. The good news is, both girls have already had echocardiograms, and we know they don’t have my specific heart defect. But, the mutation can also cause other forms of heart failure, so she will need lots of monitoring to make sure her heart is staying healthy. We see the geneticists later this week, and then we will be referred to cardiology. That’s all we know for now.

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exercise: my heart was never in it

I did a color run, once. I mostly walked.

I did a color run, once. I mostly walked.

All my life, people have looked at my long legs and asked me if I’m a runner. While I have an uncle who’s an ultramarathoner, I have never, ever liked running or really exercise of any sort. For most of my life, I thought this was because I’m just wimpy, lazy somehow. I could never complete the entire President’s Physical Fitness Test mile without a large bit of walking. Pretty much all physical activities left me easily tired and winded, so I never really played sports or learned coordination or balance. I can’t really stand on one foot. I am MASSIVELY clumsy.

Three years ago, I learned the real story behind my fainting Victorian lady’s constitution: I have a heart defect. Exercise has always left me winded and fatigued because my heart was already working as heard as it possibly could just keeping me alive. Asking it to go above and beyond was just not gonna fly. Finally, just the stress of keeping me and two other people alive sent my heart into actual failure.

Now my heart is able to function in a normal range because I take some pretty serious medications. But I still feel weird when I exercise (or visit a high altitude locale) because my medicines keep my heart rate very controlled– for most folks the goal of exercise is to get your heart rate up, but mine’s not really going to go up, no matter what I do. Even when I stood on a stage and talked about the scariest thing that ever happened to me, I worked up a good sweat but my heart didn’t beat a bit faster. Instead, when my heart rate should be climbing, I feel like I always have: easily winded and overtired.

Still, I know that if I want my heart to be healthy in the future, I’m going to have to figure out how to exercise. I don’t want to, because I, shockingly, don’t like doing things I suck at. I don’t enjoy being the flailing person at a gym. I project all sorts of thoughts into other people’s heads about how insane I look and how pathetic I am getting winded just barely jogging. Not to mention, finding time to exercise when you have twin toddlers is tough.

But after reading this awesome post from a fat woman who designed a successful fitness app, I’m feeling inspired to try to do SOMETHING more than I do now:

For the vast majority of people, competition in exercise is not fun. It’s no fun to compete if you know you can never win. It’s no fun to be on a team if you know you’re bound to let everyone else down with your performance. The rhetoric of ‘more, better, harder, feel the burn’ doesn’t work for who those of us just want to use our bodies and enjoy being in them.

I remember really liking yoga for a while there. I think that’s something I might be able to achieve via videos during a couple nap times per week, but I can’t give up all my nap times, because those are also usually my writing times. I also don’t mind walking, and think maybe I could make that happen a couple of times per week too. I’m not likely to take up running or anything else hardcore, but I can move more so that I can take care of my heart and feel more connected to my body, to enjoy being in it.

In the meantime, if you see me struggling up a hill in the neighborhood know that my heart is trying really hard to be in it.

Why I Go Red for Women: I’m a Survivor

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Today is National Wear Red Day for the Go Red for Women campaign from the American Heart Association. I’m wearing my red, not just because I think heart health is important, or because I know that heart disease is the #1 killer of women (heart disease and stroke kill 1 in 3), but because this fight is personal for me: I’m a survivor. Not just in a Beyonce sense, but as a literal actual survivor of a congenital heart defect, a cardiac pregnancy complication, and heart failure.

On April 1, 2012, I was three days post-c-section. My recovery had gone slower than most, and I was still in the hospital, a fact for which I now thank God. In the wee hours of the morning, I woke up and finally felt strong enough to try to walk the few feet from my hospital bed to the bathroom. It felt triumphant. My husband assisted me, one of our new babies nearby in a bassinet*. But as I inched my way back to my hospital bed, every inch of my recently-ripped-apart abdomen screaming in pain, I found it hard to catch my breath. “I can’t breathe,” I said to Jon. He’s an ER doctor, and his mantra is generally “if you can talk, you can breathe,” so he helped me back into bed and told me to relax and catch my breath. But even after sitting down, it was getting harder and harder to fill my lungs with air. Continue reading

i have a broken heart, but i’m ok

Sporting red for heart health awareness. Photo by Whitney Loibner.

Sporting red for heart health awareness. Photo by Whitney Loibner.

Today, I’m sporting red pants and red lips for heart health awareness. Most of the attention to heart health this month is on women and heart disease, which is a worthy cause. But this week is also Congenital Heart Defect Awareness Week, though it’s kind of going under the radar. I mean, I have a CHD and I didn’t even know it was my awareness week until a friend told me on Twitter.

Which is really just about perfect, because I didn’t know I have a congenital heart defect until I almost died. The cliff notes version is, my twin pregnancy was very hard on my body. By the end, I developed pre-eclampsia, which is not uncommon for twin pregnancies. I had a cesarean section (due to the pre-e and other factors, like my daughter’s spina bifida, and the fact that both of my twins were breech), but my blood pressure was slow to stabilize, and my counts were low. I received blood transfusions. And on day 3 post-delivery, I crashed, ended up intubated in the ICU, and was in congestive heart failure. What happened to me is known as peri-partum cardiomyopathy, but later, a cardiac MRI revealed the root cause of all of my problems: a congenital heart defect known as left ventricle noncompaction syndrome.

This means that the muscle fibers in the left side of my heart didn’t lay down properly when I was developing in the womb, so the part of my heart that is supposed to pump blood out into my body is weak, and doesn’t pump the blood very effectively. I’ve had it all my life, but my body used a fast heart rate and higher blood pressure to compensate, and so while I’ve never been very good at things requiring stamina and cardiovascular endurance (let’s be real, I have the constitution of a fainting Victorian lady), I never had enough symptoms to know something was wrong until the stress my twin pregnancy put on my body.

This makes me something of a unicorn. My cardiologists are always telling me that no one studies this condition, and it’s super rare, and they’re just sorta trying stuff on me. It’s kind of scary. I don’t really know how the course of this goes, or what to expect, or what my long-term prognosis is. I know that it’s a good thing that the medications I’m on have gotten me back up to a “normal” level of cardiac function. I take a beta blocker and an ace inhibitor. They make me very tired, as if having a weak heart didn’t already make me tired. Last week, my doctor let me try taking less of the beta blocker, though, and I already feel like I have more energy.

So, why am I telling you this? I’m not entirely sure. I guess I don’t like being a unicorn. It’s also a strange thing to effectively have an invisible, possibly life-threatening, disability. I look fine. I shouldn’t be tired all the time. I shouldn’t get so winded on the stairs. But I do.

Looking back, I probably should have discovered this sooner. I was always easily tired and intolerant of exercise. I had slow weight gain. I required (still do) a lot of sleep. I experienced strange feelings in my chest. So, in the name of awareness, here are some signs you should watch for in infants and children that might be worth a referral to a pediatric cardiologist:

Parents should be alert to the following symptoms in infancy:

  • Tires easily during feeding (i.e. falls asleep before feeding finishes
  • Sweating around the head, especially during feeding
  • Fast breathing when at rest or sleeping
  • Pale or bluish skin color
  • Poor weight gain
  • Sleeps a lot – not playful or curious for any length of time
  • Puffy face, hands, and/or feet
  • Often irritable, difficult to console

Some children with CHDs may not have any symptoms until later in childhood. Things to look for include:

  • Gets out of breath during play
  • Difficulty “keeping up” with playmates
  • Tires easily/sleeps a lot
  • Change in color during active play or sports (looks pale or has a bluish tint around mouth and nose)
  • Frequent colds and respiratory illnesses
  • Slow growth and weight gain/poor appetite
  • Complains of chest pain and/or heart pounding

So, this month, do think about things you can do to make your heart healthy, like eating healthy foods and exercising and not smoking. But also think about little signs that might point to underlying problems, and get yourself or your child checked out if you have concerns.