I hate April Fool’s Day on the internet. Some pranks can be funny, but mostly they just make me feel frustrated and annoyed. Plus, I always feel kind of Debbie Downer-ish on April 1st. Four years ago, on a bright, shiny, April 1st morning, I almost died.
On Easter morning, my pastor mentioned in his sermon that he had never had a near death experience. That he had never felt outside his own body while teams of healthcare professionals worked to save him. He went on to talk about how he had felt life-less, though, had experienced darkness, despair, depression, and how this life-less-ness is something we all can relate to, a reason we all need to experience the Life Abundant that Jesus offers. I appreciated that message.
But as I sat there, I must admit that I missed a lot of the sermon, because I have had that near-death experience. I have felt suddenly all too aware of my body’s own frailty. As my heart failed and my lungs filled with fluid, my body became a prison. As respiratory therapists, nurses, and doctors fought to save me, I felt helpless and panicked and irrational. I pushed masks meant to help me breathe away because they felt suffocating. I fought the people trying to save me as I fought for my life. And in the middle of it all, I remember thinking, they’re going to have to sedate me, or this is never going to work. Flashes of lucidity in the middle of sheer panic and terror. I remembered all of that on Sunday morning, and so I distracted myself grinning at a small boy in front of me wearing a seersucker suit instead of going there in my mind.
It’s a weird thing to be a person in the world after something like that. Around the first year anniversary mark, I was having panic attacks and intense anxiety, because I’d been so busy keeping twins alive, I never really got a chance to process what happened to me until a year later. Now, four years later, I mostly forget about that time I almost died. I can tell the story in such a way that it makes people laugh, even. Or I can shock even healthcare professionals as I tell it in as vivid a way as possible. Somehow the process of turning an experience into an anecdote has placed some distance between me and the intensity of the feelings I have about that trauma.
Also, though I take pills every day to keep my heart from every doing THAT again, I mostly don’t think about it too much. But sometimes I’m reminded unexpectedly, or something brings it up– someone asks if I’m going to have any more kids, for example–and then I remember that time I almost died. I’m usually sorry I have to mention it, like I need to spare the other person from the news of my trauma. I worry about becoming That Girl Who Won’t Stop Bringing Up That Time She Almost Died. Do people want to avoid me in case it comes up? I can’t imagine it’s really what anyone wants to hear about over cocktails. I’m even wary of writing too much about it for fear this blog becomes That Downer from that Girl Who Almost Died Once and Can’t Seem to Get Over It.
But I can’t avoid this day. It’s a marker of time for me. I was a different person before April 1, 2012, and I’ve been a different person ever since. Sometimes I think my experience made me fearless, because nothing short of death itself can ever be as scary as that day was. Other times I think it made me feel more fragile, a little too aware that it could all be over in a blink, more than a little afraid that it will be. On this anniversary, I’m not much of a person who can take a joke. I feel a little bit raw and a little bit fragile, though I am also pretty sure each year will lessen those feelings as I put more distance between myself and the trauma of that day. I hope so.
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.
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.
For the vast majority of people, competitionin 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.
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”
On Mother’s Day, I had the amazing experience of reading part of my story in the Listen To Your Mother Show here in Little Rock. Now, even if you weren’t there, you can see my story and the rest of the amazing stories from around the country, thanks to the magic of the internet and You Tube. Today, I’m posting my story here, but I encourage you to watch some of the other videos too, from Little Rock and around the country. And, coming soon, for the first time, my husband will share his version of this story, both from the perspective of the man who was holding our baby girl next to my bed when I went into heart failure, and from the perspective of a doctor, who probably would have intubated me himself while we waited for the code team to arrive, if there had been a crash cart nearby. Luckily, he didn’t have to. Blessedly, all was well.
Here’s the story of how I discovered I have the heart of a mother:
Some folks may be wondering, since my last post over a week and a half ago was OMG ONE DAY TIL BABIES LET’S FINISH THE NURSERY, whether or not I did in fact have those babies.
And what a crazy story it is.
Things started out as planned– we didn’t sleep at all the night before from excitement, and we showed up at the hospital at 7:00 am on Wednesday, March 28 (exactly one month before my 40 week due date) for a C-section that had been moved up 5 days because I suddenly had an elevated blood pressure and had started retaining fluid. I was really nervous about the surgery, but despite a little trouble getting the spinal/epidural combo in place (apparently folks with scoliosis and an extra vertebra are a bit challenging for anesthesiologists), the whole operation went very smoothly. It’s super surreal to be lying on a table, numb from the waist down, knowing you’re being cut open and having babies pulled out, but feeling nothing but pressure and tugs and then suddenly hearing cries. I’m pretty sure I was saying “I’m afraid I’m going to feel it!” to the anesthesiologist who was standing next to me as I was already being cut open.
It turns out my girls, who had been in “bunk beds” or in the transverse position for my entire pregnancy, had turned breech somewhere between my last appointment and the surgery– so I’d have definitely needed a C-section even without my blood pressure issue or Claire having spina bifida. Jon joked afterward that there are about 5 ways I could have died in childbirth this week if not for modern medicine– breech twins are one of them. Jokes aside, there is no one more supportive and awesome than my husband, who was right by my side for the whole surgery. The surgical team kept telling him when to pull out his camera for a good photo op, but he mostly focused on supporting me and keeping me calm. He did have the anesthesiologist give me some “goofy juice” at the end when I started to freak out a bit that I might be feeling more than just pressure (pretty sure that was mental), but overall, he kept me relaxed.
After both girls were pulled out, Etta weighing 6.2 lbs. and Claire weighing 6 lbs. (I am SO FREAKING PROUD of those weights for 35 weeker twins, I must say), Jon went with the babies to the resuscitation area, which sounds scary, but doesn’t necessarily mean the babies are getting like, CPR or anything. They were checked out by a team of neonatologists and pediatricians, and there was a transport team standing by ready to take Claire from the university hospital where I was delivering to the nearby Children’s Hospital (where my husband works), where she would be having surgery to repair the opening on her spine caused by her spina bifida.
It turned out that Claire’s spinal defect was both higher and larger than we initially hoped. I got to see my baby girl in a plastic transport box for about 5 minutes in recovery before she was whisked away by the transport team. I’m pretty sure the “goofy juice” is what helped me not completely freak out over not getting to hold one of my babies, but we had also prepared ourselves for the fact that this is what would happen on delivery day, knowing it would be happening since week 20 of the pregnancy. I was also very thankful to have met and consulted with the team of doctors who would be taking care of her, so I knew she was in the very best of hands.
After recovery, Etta and I were moved to the peri-partum ward, and she was allowed to share a room with me. My blood pressure and heart rate were slow to go down, and labs revealed my blood counts were very low, so on Thursday I received a blood transfusion. Everyone who came in the room and saw me afterward remarked on how much better I looked, and the color in my face, even though I was about the same shade as the beige hospital blanket that covered me. I guess I was white as the sheets before?
On Friday, Claire had her surgery, a five hour process involving neuro- and plastic surgeons to cover the 4 cm. area where you could literally see her spine. I wished so desperately that I could be there for her, but was still not in shape to be discharged from the hospital, so a social worker set up a video-conference and I got to video chat with her before the operation. She opened her eyes when she heard my voice, which made me feel so much better that she still knew her mama loved her. She came through the surgery great, and continues to recover in the NICU at Children’s. She seems to move her legs of her own accord and also to respond to stimuli, which are great signs that she may not have disability in her legs. As with everything, though, we will just have to wait and see. She may also have disability in her bladder and bowel functions, but since no babies have bladder and bowel control at this point, we won’t know until she’s older if this is the case. We certainly hope it isn’t.
On Saturday, there was talk of discharging me from the hospital as I was doing much better, but I was still feeling very very weak and not very able to get out of bed, and when my doctor suggested keeping me another day, I said I thought that was a good idea. I needed the time to continue to recuperate.
By early Sunday morning, I was feeling well enough to get out of bed and walk unassisted the 5 steps to the bathroom, as Jon was holding Etta. I remember feeling so proud as I stood up and walked unassisted, thinking this was finally the milestone I needed to get to go home. As I walked back to the bed, I felt myself getting shorter and shorter of breath. I told Jon I was having trouble breathing, and he called for the nurse. It just got worse and worse, as I struggled for breath in short gasps, and a crowd of nurses gathered around. People were telling me to take a deep breath, but short gasps were all I could manage. I began to hear crackling in my lungs (Jon later explained that this was flash pulmonary edema), and I became more and more panicked. I knew from the way I felt and the look on Jon’s face that I was crashing.
The Rapid Response team arrived and soon I was being prodded and various breathing masks were being shoved onto my face, which only increased my feeling of panic. I know enough from being raised by medical professionals and married to an emergency physician that I needed to be intubated. I was looking at Jon begging him with my eyes to get someone to sedate and intubate me so I wouldn’t have to panic and struggle to breathe any more. From the look on his face, I could tell if he’d had a cart nearby, he would have done it himself. I truly believed I was dying, lying in that bed, surrounded by people bustling around to save me, with my husband watching and my baby girl lying next to me in a bassinet.
And then I don’t remember anything.
My next memory is vague, like a dream, where you know there is something you MUST do, and in this dream, what I had to do was pull something out of my mouth. So I just kept pulling.
It was Monday morning, and I had extubated myself. I was in the ICU, where I had spent about 24 hours on a ventilator.
After consults with cardiologists and pulmonologists and internal medicine specialists and more doctors than I can count, it seems I have developed peri-partum cardiomyopathy, which was causing congestive heart failure. My terribly lay understanding is that possibly due to the stress of the pregnancy on my body, I either developed or finally exhibited a pre-existing weakness in the muscle of my heart, specifically in the last chamber (left ventricle) that sends blood out into the body. The ability of this chamber to pump out blood effectively is measured in an “ejection fraction.” Most people’s is 50% or better, and mine was 15%.
Putting me on the ventilator helped them pump fluid out of my body to take the load off my heart and lungs. They removed 7 liters of fluid from my body in my 24 hours in the ICU, and continued to take more off through diuretics and fluid restrictions after they got me out of the unit and back in the peri-partum ward.
Tuesday through Thursday were spent trying to fine-tune the cocktail of medicines I am now on to control my heart rate and blood pressure and allow my heart to strengthen and heal. Every day they tweaked the meds a bit, and every day I worked harder to get out of bed and walk and move. By Wednesday night, I finally was able to make half a lap around the ward, pushing Etta in a bassinet, Jon beside me to steady me, with nurses cheering– even those who hadn’t cared for me had heard about the girl who was seemingly ready to go home and had suddenly crashed and wound up in the ICU on a vent, so they were proud to see me looking better.
At first, the medicines made me feel worse, which my cardiologist told me would happen. I’d get my meds, and then for 4 hours afterward, feel hot flashes and jitters and general exhaustion, only able to sweat and sleep. But every day that got a little better. By Thursday, Jon and me, and Etta, if I may speak for her, were just DONE being in the hospital. Convinced that I would be compliant with my meds, diligent in home blood pressure checks, and sure to come back for follow-up treatment, I was finally discharged. I have never been so glad to breathe fresh air as when baby Etta and I were wheeled out to the curb in front of the hospital on that beautiful spring day when we finally got to go home. I’m feeling better and better since then. My heart condition may never be fully cured, but it can get a LOT better, and I have high hopes of being one of the successful cases. We will not be able to have any future pregnancies, however, because it would literally mean risking my life.
Another loss that I feel very deeply is the loss of the ability to breastfeed the babies. I had really hoped to be able to nurse them, and had been working on nursing Etta and pumping and building up my supply while in the hospital, however, after the whole almost-dying thing, my doctors convinced me that breastfeeding is a major physical strain on my body, and I needed to be conserving my physical resources to give my heart the best chance to heal, so that I could become strong enough to care for my girls. I have cried many tears over this loss, but I know that we made the right choice for our family. They need my beating heart a lot more than they need breast milk.
We’re still missing 1/4 of our family, with Claire still in the NICU, and we are anxious to get her home. I’m still pretty weak, though stronger every day, and my one outing a day is to go visit her. Blessedly, Children’s has a special “twin rule” that lets us bring Etta with us to visit her sister, and it’s super special just to have the four of us together for a little bit each day– giving us a taste of how great it will be to finally have all of us home. We don’t have a specific date that she’ll be discharged, but we hope it could be soon if she keeps meeting the goals her doctors set for her. Every day that I’m wheeled out of that NICU with only one baby feels incomplete.
Overall, though, I am so very thankful. I’m glad I was in the hospital where I could quickly get the care I needed when I crashed. I’m glad Claire has such awesome people taking care of her, and glad we have awesome families who would come and take care of her and Jon and Etta and me when we needed them. I’m thankful for two beautiful baby girls. I’m thankful to be alive.