The ECMO Girl

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Why is there still such a stigma around mental health? Why do people get so uncomfortable talking about depression, death, anxiety, suicide, behavioral disorders, etc.? Does it make you uncomfortable? Maybe it should. Because pushing yourself outside your comfort zone is where all the growth happens, isn’t it? Mental health is coming to the forefront of conversation pretty much everywhere. I am an open book, a trait that I cannot help. Sometimes I feel like a book that no one knows how to read. This is not a cry for help or attention seeking. It’s to remind you that the pictures you see on Instagram are just the surface, and the faces you walk by in the hallways at work, the people who hand you your coffee at the drive-thru, your neighbors you’ve lost touch with- we all have a story. We’ve all been through something. Some of those things are much to painful to talk about. This world could be a much gentler place than it is, perhaps if we were all a little more vulnerable with each other. 

A couple of months ago there was an event that put all my emotions into overdrive. It was a part of PTSD that I had never experienced, and it hit me like a ton of bricks and then some. I was trying to process these incredibly overwhelming and complex emotions while trying to balance a very demanding job. I recognized I was going down a very dark road. I would walk across the street to work and look for a bus, and think maybe if I stepped in front of it at the right time it would be over. I would look at the buildings and consider which would be the best to jump from. I thought about how many syringes of insulin it would take for me to pass in my sleep. You cannot heal in the same environment that is breaking you. I knew I had to take a step back, so I took a leave of absence from work.  

I very quickly started therapy twice a week and had a medication adjustment- clearly what I was on was not working. I was diagnosed with severe major depression, severe anxiety and suicidal ideation. You wouldn’t be able to tell any of those things just by looking at me, because I’m a “high functioning depressed person”. I have to be. I have to get out of bed and go to work and pay my bills. I have to go to the store and get what I need. I have to go out in the world and keep up appearances because things have to get done. And I’m sure there’s a few of you reading this feeling the same way. Depression isn’t what’s portrayed in movies or commercials. You know, the sad woman who can’t seem to get out of bed and then pops an Abilify and is suddenly flying a kite with her family at a picnic. That’s not what it is. It’s hard work. It’s not something you can snap out of. You can’t just go have a day with friends in the sun and finally you’re healed. 

So let’s circle back to my medical trauma. It is an experience so deeply embedded into who I am now. It was such a profound thing that happened I can’t just brush it aside and move on. I hate when people say that one thing doesn’t define you, or a disease doesn’t define you. But it does. If it effects every sphere of your life, it does. It has had a ripple effect that has extended farther than I could’ve ever imagined. You’d think I’d be fine four years out, right? Yeah, me too. But healing isn’t linear and there are setbacks. I’m dead center in the middle of a setback. However, I recently had an epiphany, a revelation, a discovery or whatever you want to call it. I had felt a lot of emotions but I never allowed myself to be angry. I’m angry about what happened to me. I’m angry about what happened to my body. I’m angry that I lived. I’m angry that I woke up in the middle of it all, in agony, made peace with letting go, only to wake up fine. I’m angry that I had this extraordinary experience, a miraculous recovery, and now I’m just living a mediocre life. When you survive something like this people start saying “you have a guardian angel” or “you’re supposed to be here” or “you have a greater purpose”. Okay….where is it? This idea that I’m so lucky to be alive that I have a greater purpose becomes toxic. Like I said, I feel like I’m living a mediocre life when I should be doing something spectacular. I don’t know what that is exactly, but I feel as if I’m not living up to these expectations. There was no guardian angel, or a higher power that said it wasn’t my time to go. Take it for face value. It was great medicine. I was at a great hospital with brilliant doctors and nurses who did everything they could for me. Yeah, I had <5% chance for living, but I made it because I’m young and my body is resilient. Maybe it’s too clinical and crass, but that’s how I see it. And I hope if you’re reading this you can understand that. 

It takes more courage to live than to die. I wrote my suicide note on September 18, just last month. When I finished it, I simply put it away and went to bed. The next day I stayed in bed and cried all day. I didn’t move until 8 pm. About a week later, I felt significantly better. A weight was lifted off my shoulders. I had to get my thoughts from pen to paper. It was cathartic. It helped, tremendously. I’ve been off of work for six weeks now. I plan to take a few more and make sure I’m ready to go back. I’m in a much healthier place now. It’s been hard work to face things I didn’t want too. Mental health is so important and so real. So whether you’re an ECMO patient who follows this, or one of my friends reading this, or a stranger on the internet  that stumbled upon this, you’re not alone. I hope you can take solace in reading this and knowing that. And if you need help, it’s okay to get it. It’s not weakness. Its strength. 
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Q: Oh my gosh. First, I just wanted to thank you so much for making this blog. I went through something so similar. I got pneumonia, didn’t realize I had it, and ended up stranded in the ICU with sepsis, ARDS, kidney failure and hooked up to an ECMO machine. The only difference is that I was VV ECMO. This blog has nearly brought me to tears so many times. I’m younger than you, still in my teens, and you are such an inspiration to me. I’m not going to tell you that you’re a miracle, because I’m sure you have heard it so many times, but you have affected me so much more than you can imagine. I seriously cannot thank you enough. It is so hard to find someone who has gone through something so similar, especially with how rare ECMO is. I’ve commented before, but not in a question box. Finally, here’s the question. Since you were VA ECMO, was your scar an oval shape or a different shape? Weird question, but just wondering if the cannula for VA is differently shaped. Sorry the comment was so long!

A: Thank you so much! This is awesome to hear and exactly what I had hoped for people like you to find. It's very difficult to find other young survivors of EMCO. There just aren't many out there. And with HIPAA, its nearly impossible for doctors to connect patients with similar stories. I hope this changes over time. I have two main scars from the VA ECMO cannulas. I have one from my femoral line, that happens to blend right in with my bikini line- or the body's natural folds. The other one is on my chest and it's just a straight line, but relatively large in length and diameter.

PS: Always feel free to direct message me on Instagram if you ever need someone to talk to!
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I have not been posting as much as I anticipated when I first started this blog. I felt like I had so many opinions, experiences, and different information rushing around inside my mind. I thought I would have hundreds of things to write about endlessly. But the truth is that initial shock and most of the healing happened within my first year or two after my admission. Then you slowly go back into a routine and healing becomes part of that routine. It's still a paramount experience. But I'm not stuck in a place where it defines me anymore. It certainly has pushed me to be more of an advocate for ECMO patients and critically ill patients in general. This will never change. It has truly become a passion of mine to be involved in medicine and be part of a Patient Advisory Council. Which brings me to the heart of this post.




I have been fortunate to meet two patients on ECMO circuits. Seeing these patients in the same position I was in has been somewhat jolting. Seeing them on the ventilator, the ECMO machine, the drips and IVs, the wires and leads, it can be very overwhelming and make the room feel so small. It's so strange to stand in this tiny room with this very critically ill person, suspended in animation, barely surviving. This person who is someone's child, and might have children of their own, who has dreams, plans, and aspirations, at the mercy of modern medicine and a miracle. While I stand on my own two feet, breathing without complication, thriving and watching. To see them and know I was once them brought tears to my eyes. It's a reminder of how delicate our bodies are. ECMO is always a last-ditch effort. To meet the family members who stay and pray by the bedside 24 hours a day and offer them my support is so unbelievable. I get to stand in front of them as living, breathing proof that I was able to survive. And I don't think this is like dangling a carrot in front of a rabbit. I think this shows that miracles happen and people can heal against all odds. It gives them some hope, something that they can hold on to. And I genuinely hope this makes their journey a little less grim, and a little more hopeful. I am just filled with gratitude for the experience I had to go through, and the people that I've meet along the way. Forever so blessed.

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I feel like I’m finally ready to open up and post this. Everything I write about is to give insight to friends and family, and the medical community who visit this blog. There’s a lot that I’ve touched on, and I usually share things with a positive perspective. But it’s also important to know that like any other trauma patient, I had very difficult, painful, emotional, heart wrenching moments. There are two in particular that come to mind that I feel like I’m ready to share even though they still carry profound sadness.

My first experience takes place shortly after I left the hospital. My mother and I had decided that we wanted to scrapbook what we could of my hospital stay. To others it may seem strange, to want to see the photos and to hear the stories. To me, it was a way of understanding and filling in the gaps of missing time. It helped me, and it still does. We were downstairs in our basement, my mom had it set up as her art studio. Ed Sheeran was playing on the radio. I was wrapped up in blankets and sitting at a big white table. I had my wound vac next to me. All the ICU photos were spread out in front of me. My mom was answering my questions, trying to fill in missing information for me. Tears started to fill my eyes. I told my mom I just need a moment to be sad for myself. I had heard so many people tell me how strong I was and how proud they were. I needed a moment to allow myself to feel the overwhelming and utter sadness that I was keeping in. I needed to allow myself to recognize that I went through this paramount medical experience. I needed to grieve. I just sobbed. I was inconsolable. And I needed that release in order to move on. I allowed myself that one moment of weakness, and then I started picking up the pieces.

The second is an experience while I was in the CVICU (cardio-vascular ICU). It’s my only memory of being in the CVICU because I was so heavily sedated and induced in a coma. The rest of my ICU experiences I share come from the MICU (medical ICU).

I peeled my eyes open slowly. It must have been in the middle of the night. I didn’t see many lights on outside, just one above me. It was dark outside. I stared at the fluorescent light in the ceiling, blinking, trying to adjust my focus. Everything was blurry. I couldn’t move my legs or my arms. My body felt so heavy. I felt something uncomfortable in my chest. I looked down to my lower right and I saw a glimpse of a giant red tube coming from chest. I turned my head to the left and I saw my PICC line, all of my IVs and wires. I saw a dozen monitors next to my bed. I was completely alone in my room. I looked around the room for a familiar face, but no one was there. I don’t think I was supposed to be awake. I don’t think I was supposed to come out of sedation. It’s difficult to explain, but when I think I back to this moment I can’t remember the pain I was in. I can’t feel it. But I can remember the feeling of laying there thinking how incredibly uncomfortable I was and wanting it to end. So I looked at the ceiling, and stared at that fluorescent light. I felt a tear roll down my left cheek. I wasn’t sure if there was a God but in my mind I prayed while I stared at that light, that he would let me go. I told him that I was ready and I couldn’t take anymore. I had done my fighting. My body hurt. I had accepted what had happened. I had made peace with everything in that moment. I was okay letting go. I was okay moving on to whatever was beyond this physical world. So I closed my eyes and everything just faded away. Peacefully. Little did I know I would wake up again in a week and I would make a remarkable recovery. Every time I talk or write about this memory my eyes fill with tears, even three years later. I was 20, about a week and a half shy of 21. Can you imagine? Being 20 years old and making that decision alone in a hospital bed, hooked up to machines; closing your eyes and accepting that’s the end? I just want everyone reading this to take a moment and be grateful for everything you have. Appreciate who you have around you. Be grateful for your health, and the resources and people around you who can help you. Reach out to someone and tell them you love them. Don’t stress the small stuff. There is so much more to this life than we know; and it is full of such amazing, sweet, kind and remarkable people and incredible opportunities.
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The picture above is my dinning room the day that I came home. My parents had displayed all of the cards and well wishes that people had given to me. Looking at this picture is always a friendly reminder of how many people I have to live for, and how many people love me. I have been filled with nothing but gratitude and appreciation this last month. I've returned to a job in medicine helping cancer patients. I am so thankful to have the job that I have, the people I know, the things I've been a part of, the nurses and doctors who will always remember me. I'm thankful for my family, my friends, my dog and everything in between. I am most grateful to be alive.

I requested that family members send me any pictures of me in the ICU they had taken. Ones that I had not seen before. I want to see them all. I like to look back at them. It's emotional, but not in a sad way. I think it's a more complex mix of fascination, gratitude and amazement. Sometimes I wish I could go back and do it all over again, because everything happened so fast. A lot of it is a sedated blur. I would observe more. I would notice things I've forgotten. I'd be more grateful for where I was and the outcome that Strong was able to give me.

I wish I could go back and relive it- not for some dark twisted fantasy. I would journal, photograph and document every piece of my stay. And I would use this to help me propel from where I am now. The more information I'm able to provide to physicians and nurses, the more I can help them with improving the patient experience. The more information and experiences I share publicly, the more that patients can feel safe to reach out. When I was inpatient, only awake for a few days, I sobbed at 7 A.M. alone in my hospital room, with the sun beaming in from the corner of the room and the helicopter hovering over the roof. All I wanted was to be discharged and to put everything behind me. I called my mother crying and said I wanted to sign an AMA form (Against Medical Advice) in order to leave. But lets be honest, no one just signs an AMA and leaves the ICU at will. So, I look back at that moment and wish I had just taken a deep breath and taken in that sunlight that was shining through.

I'd also like to announce that I've become a board member of the Patient Advisory Council for University of Rochester Strong Memorial Hospital. The purpose of the board is to improve the patient experience and tweak and better the process in the hospital. I'm pleased to bring the perspective of a critical care patient. I'm very excited to be a part of this and make a difference at the hospital that I work for; and that saved my life. Thank you all for reading this blog and checking in!
(Sorry I haven't posted in so so long.)
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About me

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Hey! My name is Stephanie and I'm a 24 year old type one diabetic living in Rochester New York. On July 13th, 2015 my life was turned upside down by a medical fluke. It was, as we call it, a "perfect storm." This is a place for me to share my experiences, struggles, victories and much more.

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