Story Collider

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Earlier this year, I participated in The Story Collider – live, story telling featuring true, personal stories about science. The story I told was about how my road to recovery after open-heart surgery has been less like a detour and more like an exit ramp to a entirely new highway. It was recorded, but sadly didn’t make the podcast. You can listen to it via the video below (audio only) or read the full script I told it from below (notes from which you can see tightly clasped in my hand).

 

On July 18th, 2012, I woke up in the ICU after open-heart surgery and had two immediate thoughts:

  1. FUCK
  2. Can we go back to 8 hours ago?..I didn’t NOT see this coming.

If you’re wondering how I might not see pain like this coming, the answer is: because I’m a scientist.

When I found out I needed surgery, (less than six months earlier) I approached the entire thing more like a scientist and less like a patient. I was trying to science the shit out of it before “sciencing the shit out of it” was even a thing. Science is what I know. It’s who I am.

I have degrees in mechanical engineering and space studies and in 2012 I was still working on my PhD in astrophysics (which is a story in itself). In fact, if my heart condition hadn’t been discovered, I would have been planning a trip back to England, where I had been studying, to finish up. But instead I was planning to have my chest cracked open, which is totally something you plan for when you’re 36, right?

I should back up for a second. The reason I was having heart surgery was because while following up with a cardiologist on a heart murmur I’d had all my life, it was discovered that I had an aortic aneurysm. For those of you that don’t know, an aneurysm is a ballooning out of the tissue, in this case the tissue of my aorta. For someone my age, height, weight etc, my aorta should have been around 2 centimeters in diameter, but it was showing up on the scans as 5 centimeters. That put me in the “don’t freak out, but go see a surgeon” category according to my doctor. I kid you not, she actually emailed those words to me. Yeah, so not only did I find out I had a serious heart problem, I found out over email. I suppose that’s better than a text or a snapchat tho right? I can just picture it: broken heart emoji 💔, doctor emoji 🏥, thumbs up emoji 👍, LOL 😉.

So I got a recommendation for a surgeon at Columbia and after meeting with him, the scientist in me totally told the patient in me to go sit in the corner like I got this. From the first day I met my surgeon, I was pestering him with questions that no patient in their right mind probably asked, like: Can I see the OR? Can I observe a surgery? Can I meet the perfusion team? Can I have the part of my aorta that you cut out? Lucky for me my surgeon took this all in stride. We even got to a point where he would tell me cool stuff about the cardiovascular system and I would give him stargazing tips.

Outside the hospital, I did my own research. I read books on the history of open heart surgery, essays written by top cardiac surgeons, and memoirs of people with heart disease.

I found out that my aneurysm was due to the fact that I was born with a congenital heart defect in the form of a bicuspid aortic valve. Most people (roughly 99% of them) are born with a tricuspid aortic valve (meaning three leaflets), but I was one of the 1% born with only two. (Probably the only time in my life I will be part of the 1%!) My research also uncovered the fact that the aortic valve and the base of the aorta form from the same embryonic tissue so people with bicuspid valves often have less fibrillin-1 (an elastic protein) in the wall of their aorta, so their aorta is more prone to stretching out faster to the point of an aneurysm. It’s like a genetic buy one get one free!

A big part of my life as a scientist is communicating what I’ve learned, so naturally my first instinct was to start a blog. I called it Defective Heart Girl Problems since I figured that made a pretty good hashtag. And honestly, I thought I was starting the blog more for my friends and family, to keep them informed and let them know how I was doing, but in retrospect, the blog was totally for me. Writing about the science of my heart and what I was about to go through was a coping mechanism. It was the only way I knew how to deal with what was happening. I felt comfortable thinking about open heart surgery as a scientist. I didn’t feel comfortable thinking about open heart surgery as a patient. I remember having the briefest thought pass through my head after my first surgical consult – “should I be freaking the fuck out?” But it passed as quickly as it came and was replaced by “What does heart surgery actually entail? Hearts are crazy! I wanna learn ALL THE HEART THINGS!”

Even the morning of my surgery, as I walked into the OR and climbed up on the operating table (yeah, that happened), I still don’t think I had a clue how vastly different knowing what was about to happen was from actually experiencing it.

So back to the ICU, the pain when I woke up was like nothing I’ve ever felt before. It didn’t help that they mismanaged my pain right out of the gate, but seriously I couldn’t even move, let alone think about moving. When the bone holding your chest closed has been sawed in half and then wrenched back together, anything that puts stress on that tenuous connection hurts. like talking or even breathing. All I could think about was how to go back in time those eight hours so this never happened. But I was stuck.

So I took it one day, one hour, and sometimes even one minute at a time. I practiced sitting up, standing, and eventually walking. I just focused on putting one foot in front of the other. Every day was a challenge, but most days I got a little better. Some days I got worse, but then I got better again. It took a FULL YEAR of concentrating solely on my physical recovery to get to the point where I felt as strong as I did the day before my surgery. And for six months after that I was riding high, full of energy with a new lease on life. I thought, OMG I did it. I’m back to where I was before this interrupted my life. Now I can get on with things and finish my PhD.

But no sooner did I start putting the wheels in motion, then I was rocked by the emotional toll of what I had just been through. The scientist in me had totally ignored what the patient in me had been through. All of a sudden it was like I was reliving the days and months after my surgery, but this time emotionally instead of physically. As if when I lived through those moments the first time, my brain was archiving all the emotions for later because it knew I couldn’t process them. And now that I was physically healed, it was unpacking all the fear and pain and the anger it had set aside. I was diagnosed with PTSD because I had essentially experienced my surgery as a trauma. Even though my scientific brain knew it was necessary, my body rejected the invasion. Which when I think about it makes perfect sense. Having your chest cracked open is like a violation of your very being. Having someone reach inside you and stop your heart, while a miracle of modern medicine, is very hard to accept.

I found a therapist and again I took it one day, one hour, and one minute at a time. I put one foot in front of the other and kept going. After another year and a half, I felt like I was on the way to getting my life back. And more importantly I felt was on the way to getting back to who I was the day before surgery, someone who needed to finish their PhD. I bought a plane ticket to England and cleared my calendar. But a series of visa issues ended up delaying my trip, and for the first time in years I found myself with the time and space to stop and look around me and think about where I was in my life. And I had this revelation. I realized I’d spent the last three years trying to return to pre-surgery me, but pre-surgery me didn’t exist anymore. Sure I could get back to the physical equivalent, but physically I really wasn’t the same. I have a four inch synthetic tube as the root of my aorta, and my sternum is laced with steel wires, and I have an bad ass eight inch scar. Not to mention a couple tattoos I got along the way.

But also, I wasn’t emotionally or even psychologically the same. After what I had been through, I cared more about doing what made me happy than before and I cared less about what other people thought I should be doing. I had a much clearer sense of what mattered and what didn’t and what was worth my time and energy and what wasn’t. It dawned on me that going back to England to finish my PhD felt like being pulled backwards in time, not forward. I realized that putting one foot in front of the other after surgery hadn’t let me back to who I was, but it had led me to who I wanted to be. Surgery hadn’t been a detour from the road I had been on, it had been an exit off one road and an entrance onto another. So I cancelled my trip, left my thesis unfinished, and I haven’t looked back since.


 

 

 

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6 comments

  1. Ellen Hunt

    I have so much admiration for you — who you are on your journey — and am, as ever, sending hugs.

    Sent from my iPad

    >

  2. Rita Savelis

    Love your post and your site. Your writing speaks to me. Thanks for so eloquently putting into words what I feel one year after OHS

  3. Jason

    Hey Summer heard your story on the Nerdist podcast today and just read your whole thread.

    I am 39 and have BAVD and have to have valve replacement surgery due to aortic stenosis, probably around the end of Oct. You said on the podcast that you hardly hear from people in your age bracket that are in the same boat, well I have my life jacket on!

    Please feel free to email me if possible as I don’t know anyone my age that has had open heart surgery. Where you are a scientist and “sciences the shit out of it” I’m an average joe family man and scared to death. I’ve talked to a couple older people I know that have had heart surgery due to heart attacks but no one that has had to say, “sure break my chest open” willingly.

    Thank you for your story!!!

  4. sarahpierce2015

    Summer,

    I heard you on the Nerdist podcast today and I was touched by your story as a scientist and about your bionic heart. I almost was to the point of tears when I was hearing your account of your experience in the hospital and the time after.

    I myself got a rare form of cancer that had invaded half my liver three years ago at 29 years old. It was discovered on a fluke pain that was first thought to be my appendix, but was soon found out on a CT scan. Proceeding that was a string of hospital visits for tests and then a major surgery where they removed my right lobe of my liver. I got through it by researching the hell out of everything and talking to everyone that was going to work on me. My surgeon said he has never seen anyone so determined to get up and to have an active part in their own recovery. The surgery went for 12 hours which was twice as long as predicted. They thought I would recover enough to return to work in three months as apposed to the six weeks originally predicted. I actually was back to work in the six weeks and was out of the hospital in five days, two days earlier than they thought would happen. I wasn’t going to let this knock me down and so I was bulled through it, making sure I followed all my doctors instructions. The thing is that mentally I shut down. I had to do this to assure my health was good. I wasn’t ready to die at 29 and I was determined to stick up a middle finger in deaths face. I didn’t recover entirely physically until over a year later, but I never imagined that I would have to deal with PTSD. That is when the nightmares started and I started having panic attacks just being in the hospital for a regular appointment or smelling antiseptic. I would cry for no reason and I was feeling guilty because a couple of people very close to me had recently died from other forms of cancer and I didn’t even have to go through any kind of radiation. I felt like I got off too easy, that I shouldn’t be going through this emotional trauma. My mom thought this was insane, but my husband put a word to it that was new to me, survivors guilt. Three years later I am still dealing with this through therapy and medication. I have taken this opportunity to rethink my life and have made it my mission to try to make the world a better place. I started teaching science to kids through a non-profit and now I am substitute teaching for high school. I plan to move forward either with the teaching or take my LSAT and go to law school. Also now I am 32 and three years cancer free.

    I wanted to tell you my story because I am young and felt alone because everyone around me that was sick was older. I didn’t have a way to relate to many people and I also felt that since I was young my PTSD should not effect me and that is not only insulting to me, but those people that are older and continue to fight. Thank you for making me feel not so alone with what I went through and still do go through every day I see the huge scar across my abdomen. Your passion and determination for science touched me and also made me proud to work with an organization that works to teach science early on in elementary school.

  5. Hi Summer. I heard your interview on Nerdist and I could relate to a lot of what you went through. I had a mitral valve repair in Nov. of 2013 as a very active 41 year old (ran half marathons and a marathon, fairly competitive times for a middle aged amateur). I also had no symptoms pre-op but I had a leaky valve and the leakage had reached a threshold that demanded surgical repair. Like you, I had many symptoms post-op and had zero support from physicians in navigating my experiences. In fact, more than one cardiologist acted as though I was either exaggerating or flat out making up symptoms! It was beyond frustrating. Almost 3 years post-op, many of the symptoms have gone or have reduced enough in intensity that I’m more or less living my life again, but I’m nowhere near back to how I was with my running (which is a passion for me). Still not sure what exactly causes some of the symptoms (breathing problems, random bouts of AFIB, migraine auras), but I’ve adjusted to it as best as I can.

    I also blogged out a lot of my experiences which helped me cope (and still does). Anyone reading this who wants someone to chat about their recoveries is welcome to check it out: bertshealth@wordpress.com

    Best regards.

  6. Bryan Malinski

    Hi Summer,

    My name is Bryan Malinski. I am 28 years old and on august 15th, 2016, i had the exact same open heart surgery procedure done. I had an aneurysm in my aortic valve, because of the two flap opening in my heart. So they treated the aneurysm and inserted a mechanical valve. I am currently listening to your interview on the Nerdist podcast. And heard that you would like to get in touch with people that are around you age. Very funny coincidence and great to listen to your perspective on your procedure and your recovery. so thank you!”

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