congenital heart defect – erniebufflo's south & west kitchen

June 22, 2015June 22, 2015

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.

February 19, 2015

exercise: my heart was never in it

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.

February 5, 2015February 6, 2015

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

June 24, 2014June 24, 2014

Call Professor X, I’m a Mutant

Many of you are probably aware of the fact that I almost died three days after I had my babies. I experienced an often-fatal complication called peripartum cardiomyopathy, something I had never heard of until it happened to me, but according to The Daily Beast is actually on the rise. The first sentence of that piece, where the woman describes feeling like her head was being held underwater, just felt so true to what I experienced as well– I often describe it to people as feeling like I was drowning inside my own body. As my heart went into failure, my lungs literally began to fill with fluid, and I could actually hear it crackling as I struggled to breathe, before I was sedated and intubated and moved to the ICU. Thank GOD I was still in the hospital 3 days postpartum, because there was a code team ready to save me. If I had not asked for one more day inpatient to work with the lactation consultant on breastfeeding, I could have very easily been at home, where I might have died. (After my near-death, I was put on some serious medicines which meant my breastfeeding days were over, but you could say that my desire to breastfeed saved my life!) Continue reading “Call Professor X, I’m a Mutant”

February 7, 2014

i have a broken heart, but i’m ok

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.

June 13, 2013

Color Me…Bieber

Disclosure: The kind folks at Color Me Rad gave me a free spot in their colorful 5k, as well as a hat and a pair of socks. I was not required to post anything, and I haven’t even run the thing yet. Everything I’m about to say is 100% from me.

I’ve come a long way in the last year. Just over 14 months ago, I had just birthed my two beautiful Bufflo Gals when I stopped breathing and wound up in the ICU on a ventilator. My official diagnosis was ultimately a congenital heart defect called left ventricle non-compaction syndrome, a defect in which the chamber of my heart that squeezes blood out into my body didn’t form correctly, so it doesn’t pump blood as efficiently as it should. This defect, which had never reared its head before, though I have had it since embryohood, apparently, was exacerbated by the stresses of twin pregnancy, pre-eclampsia, a c-section, and the fluids and blood I was given after surgery. Basically it was a perfect storm that landed me in congestive heart failure.

Still, over a year later, regularly taking my old man meds (seriously, I’m on a beta blocker and an ace inhibitor, the type of thing usually marketed to old men via commercials that feature things like fly fishing), and I’m doing great. My heart is functioning at a range that puts me into the “normal” zone. And as I keep up with two babies rapidly heading into toddlerhood, I’ve been thinking that I’m ready to be more active.

Enter my friend Kyran with a fun opportunity for some of us Little Rock bloggers to participate in a fun little thing called Color Me Rad. It’s a color run. It’s not a marathon, it’s not for a cause, it’s just for the joy of it. And for me, it’s a celebration marking an end to a year in which I considered myself sick, and a step into a life of health. I know I don’t have the stamina to run the whole thing at this point, but this is my kickoff. I plan to effing frolic, man, and I’m pleased to be doing this thing with the rest of team Rad News Bears: Kyran, Kerri, Amy, Sarabeth, Alison, Whitney, and Jacklyn.

If you’d like to join this little celebration, you can still sign up online for the Little Rock race through tonight, and after online registration closes tonight, you can sign up in person on Friday 10-7 at: Cardinal Health, 5426 Landers Road, Sherwood, AR 72117 (Next to the Tractor Supply Company).

Special bonus? I tried on my swag, and well, let’s just say I found my doppelganger:

June 26, 2012June 26, 2012

Claire update: no surgery this week

After seeming to talk us into the shunt surgery in the ER, our neurosurgeon seemed to spend our clinic visit talking us out of it. While she seems to agree that the surgery is basically inevitable, there is still a slim slim chance the hydrocephalus will arrest, and since she’s not having severe symptoms at this time, we have a little time to wait. In the meantime, we’re probably going to start her on Zantac and see if that helps the vomiting.

I’m glad this means no surgery this week, though I’m pretty sure she will need the shunt at some point. Guess we’ll be staying in style when that happens, because the new infant and toddler unit at our children’s hospital will be open by then.

I also realize I haven’t updated about MY health issues in a while. Based on my slow recovery and echo-cardiograms, my cardiologist had me do a contrasted cardiac MRI. It was kind of crazy to actually feel the contrast get warm in my chest every time the MRI machine was on, and I now totally see why claustrophobic people totally wig out in those things. Personally, I pretended I was an astronaut about to be blasted into space. Anyway, the upshot is, it looks increasingly like I have a congenital heart defect called left ventricle non-compaction syndrome, which basically means the tissue in my left ventricle didn’t form correctly, which is why it’s weak and has such a “poor squeeze.” The strain and stress of the pregnancy on my body is what finally made my condition severe enough to notice. I now feel vindicated and want to go back to every PE teacher I ever had and explain that my poor performance in everything endurance related is actually the fault of my heart.

The MRI also showed that my ejection fraction (a measure of how well the heart pumps blood into the body) has improved from 15% to about 30% (normal is still 50% or better). I’m still doing well on my ever-increasing cocktail of meds, and I think my doctor will be adding a third medicine (I’m already on a beta blocker and an ace inhibitor) this week, and I hope the transition goes well.

Anyway, that’s what’s going on with Claire and me health-wise. Thank you again for all of your support, thoughts, and prayers.