The ECMO Girl

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.

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.

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.)

I recently spoke at a cardiovascular ICU retreat where I was asked about my body image, and how I've handled the physical changes I've experienced. Body image in general has always been a sensitive subject for myself, as I'm sure it is with many young women. The way I view my body was never good to start with and it has been increasingly difficult to maintain a positive body image.

All throughout high school and up until I was sick I was a steady 135 pounds at 5'6". During my ICU stay I gained about 40 liters in fluids. I was placed on Lasix to flush out fluids and lose the water weight, and was back down to around my normal weight. Not long after that I felt like I was rapidly gaining weight and was suddenly 160 pounds about six months later. By October 2016 I was 182 pounds. This is absolutey the heaviest I had ever been. My endocrinologist and I made the joint decision to put me on Victoza. This is only approved for Type 2 Diabetes but I was having a difficult time controlling my sugars and lowering my A1C, and another benefit of Victoza is weight loss, so we felt it was worth a shot. It worked! As of right now I hover around 147 pounds. I still want to get back to 135 but I'm happy with what I've lost and I feel a lot more like my old self.


 Along with the weight I was dealing with the condition of my arm. At that time I was still sporting my skin graft all while working in a psychiatric pharmacy. This was extremely difficult because of the nature of the patients and the sensitivity it takes to interact with them. I often wore my sleeves down covering my graft to avoid questions. The scar on my arm was dramatically reduced after my third surgery this past December. My plastic surgeon worked a miracle for me. I felt like I could finally close this chapter of my life. He gave me my life back. After that I learned to really love my scars and wear them with pride. I accepted the fact they are a permanent part of me.

At the end of the day I've made a great deal of progress and I am healthy and well. Bigger scars make better stories.

Post-intensive care syndrome is essentially a term to describe the lasting effects after an ICU stay. It can include: cognitive, mental, and physical health issues. For me, I had first learned about PICS when I spoke at a medical retreat. One of the doctors had done a short presentation on PICS. I remember sitting with my mother and almost crying because when I learned about this condition I finally felt like what I had been (and still am) feeling had an answer. I felt like my symptoms had been validated in that very moment. I never felt like I fit the diagnosing criteria for PTSD. I hadn't experienced nightmares or terrifying flash backs. I just didn't feel like I was "bad" enough for PTSD. So when I learned about PICS it was a relief. I had an answer for why I had so many physical issues, memory issues, cognitive issues, and anxiety and depression.

I'd like to go more into PICS for all three aspects and how I was effected by each. Physically, many patients who have ICU stays over one week, develop severe infections like sepsis, and/or require a ventilator develop ICU acquired weakness. I experienced all three of the criteria. I did have to relearn how to walk due to how long I was in a hospital bed comatose. My muscles had began to atrophy and I was extremely weak. As I've talked about in a previous post I had a very difficult time with exhaustion and daily activities like dressing myself, showering, etc. This overwhelming exhaustion had lasted for well over a year. I'm still frequently exhausted, but not to the same degree as before.

Cognitive or brain dysfunction is referring to issues like critical thinking, problem solving, memory retention, and paying attention. I would say this is the part of PICS that has effected me the most and the longest. This is a daily struggle for me that often no one understands. Usually when I try to explain this and how it feels I often get "oh yeah I'm terrible at remembering things too" or, "I have ADD, I'm the same way." It's not the same. Because although I had ADD well before my illness, I wasn't like this. I forget things daily, often minutes after being told something. I can't remember plans or other people's plans if I need too. My thoughts are so scattered. I barely have the ability to think critically anymore. If I try, I get frustrated. I'm easily distracted and I feel sluggish. It's effected every part of me. Especially my job duties. I constantly worry about people's perception of me now. I would like to explain this to everyone I meet so I can have their patience and understanding. But, at the same time I don't want to say anything because I don't want to explain my whole story to every single soul I meet. PICS patient memories have been compared to Alzheimer's and dementia patients.

Mental issues refer to PTSD symptoms, anxiety and depression. I really have never talked about my depression with my illness. I've really stayed away from going in depth about it because I'm so focused on using my experience for talking about the good outcomes. But it's just as important to share the struggles of depression because so many ICU survivors experience it and the whole point of this blog was to share insight and help support other survivors. I don't feel like my depression really hit me until after I returned to work and lasted for several months. I didn't take the proper amount of time mentally and physically to heal before returning to work and as I've discussed before things were not the same when I returned to work. I was severely depressed and frequently found myself at night wishing that I could go back and not live and not fight as hard as I had. The sadness and stress was so overwhelming and consuming and I had no one that could relate to me that was within my family or social circle. I felt very alone. I remember being at work one day in January at the pharmacy, we worked across from a diner that always had heavy traffic with tractor trailers. I remember looking out the window as it snowed. I thought about walking outside, across the parking lot, and across the street with traffic ready to be hit by a semi and not think twice. Or overdosing on insulin because I knew it would be painless. I never talk about these things because they're so shocking, disturbing, and painfully real. But this is what it was like. And i remember being in my apartment with my boyfriend collapsing and breaking down in his arms and crying on the floor because I was so unhappy and I couldn't get the feeling to go away and I didn't know how to fix it. The best healer for me was time. I'm happy to say that now I am genuinely happy and moving forward. As for anxiety, the only anxiety I experience is related to getting sick currently. A minor cough scares me. I'm scared that any degree of what I experienced would happen to me again. I've had one panic attack since getting sick. I threw up at work, freaked myself out, was tachycardic and drove myself to the ED where I collapsed in the lobby. I'm extremely paranoid now of any minor cold or illness that might develop and there's nothing I can do about that. That's just part of living with
what I've gone through and it isn't uncommon.

I really hope this gives some insight into PICS and how it effects patients. The information I used can all be found here. It goes more in depth statistically and clinically.