"Hi everyone, I want to share my ECMO story. I was on VV ECMO for 40 days and spent 65 days in the hospital. I experienced many complications and it’s a lot to unpack, but I hope sharing it helps others feel less alone in their own battles. It all started on March 3, 2025, when I tested positive for the flu after visiting urgent care. I returned later that same day because I was vomiting, coughing, and running a 102° fever that wouldn’t come down even with Tylenol and ibuprofen. My oxygen levels were okay, my heart rate was elevated, but the doctor wasn’t too concerned. I’m 24, relatively healthy, and have no pre-existing conditions, he told me I just needed rest. That night, I couldn’t sleep at all. The next day, still feeling awful and now with chest pain, I called an at-home urgent care service. I didn’t go to the ER, thinking, “I already went to urgent care twice.I must just be really sick.” But the moment the home care team arrived, they called an ambulance. My oxygen had dropped to 82%, and who knows how long it had been that low. I was admitted to the first hospital on March 4th in the evening. They tried everything to raise my oxygen levels, but nothing worked. I was diagnosed with severe pneumonia which was “basically everywhere” in my lungs and they told me they needed to intubate me and put me on a ventilator. I was terrified. Just 48 hours earlier, I’d been walking and talking. Now I was being sedated and ventilated. That was the last part of my story I was awake for. From that point forward, I was in a medically induced coma for over a month. Even on the ventilator, my oxygen wouldn’t improve. I was transferred to a specialized pulmonary hospital and placed on VV ECMO on March 5. They had to change my cannula sites twice due to bleeding and movement. Around March 18, they decided to do a tracheotomy to avoid long-term vocal damage from the breathing tube, it was complicated, but eventually successful. They also began testing to see if my lungs were ready to function without ECMO. But during this process, one lung collapsed, then the other followed shortly. Chest tubes were placed, and I remained on ECMO. Throughout it all, my fever stayed dangerously high. I relied on the Arctic Sun cooling constantly. At some point early on, I don’t know the exact date, they placed a PEG tube, but it clogged and had to be replaced on April 2. Then, it dislodged into my abdominal wall on April 21, and was replaced again on April 25. Because of my many reactions and complication, my team had to constantly adjust my treatment and medications. For example, I had severe bleeding from all cannula sites, and even from my nose and eyes. They avoided blood thinners, fearing it would increase my bleeding but also worried clots could form in the ECMO machine. Thankfully, that didn’t happen. One small but emotional thing, my hair became so matted that they had to cut most of it off. They began clamping the ECMO on April 12, and I responded well. On April 14, I was officially removed from ECMO. Then they began reducing sedation. I don’t remember my first conscious moments,but I started having “awake moments” soon after being taken off of ECMO. My first memory is April 17, I used a speaking valve on my trach for the first time. By April 20, I started trying the trach collar, and on April 24, they removed the trach altogether. I was transferred out of the ICU on April 26, into a standard hospital room where I began physical therapy and more recovery. My PEG tube was removed on May 5, and I was discharged on May 7. Mentally, this experience was incredibly hard. Tons of anxiety, crying and pain. I’ve since started anxiety medication, and it’s helping a lot. I’m doing very well now, walking without a walker and needing only 0.5 to 1 liter of oxygen. I still have some nerve damage in my forearms and hands, but my primary doctor believes that will improve over time as inflammation goes down. I’ve lost a lot of hair, but that’s not permanent. Apart from general weakness and deconditioning, I have full control of my body, and my cognitive function is completely intact (which was a big worry)This experience changed me in ways I’m still understanding. I was in a coma. I was on life support. I was bled, cut open, and hooked up to machines that breathed and ate for me. But I’m here. And I’m healing. If anyone has questions or is going through something similar, please reach out. I have so much more to share and I know how isolating this can feel. You are not alone."

"My entire life, I have struggled with asthma and an anaphylactic food allergy. As I grew older, and my asthma became more uncontrolled- I was warned by several doctors that it was something that should never be taken lightly. Although manageable, asthma sneaks up on nearly 4,000 people yearly resulting in death or severe hospitalization. I never once thought I could be a part of that number. Thanksgiving was coming up. November 21st, I felt ill. I mean, nothing out of the ordinary, sniffly, maybe a bit achy,- and of course, feeling like I was breathing through a straw. My mother quickly rushed me to the ER when I could not take a full breath. As the hours went on, nothing the doctors were trying was working, and I continued to decline despite all efforts. That is when the panic set in, when the normal treatments were not putting a dent in my breathing. I was hypercarbic and hypoxic at this point and in full status asthmaticus, and respiratory failure. It was time to be intubated. The last thing I remember is the removal of the Bipap mask, and then I was out. In a medically induced coma and on ECMO for 4 days, and in the ICU for 8. I woke up days later to the foreign feeling of a plastic tube down my throat, completely bewildered. Where was I? What had happened? Was the TV really speaking to me in Spanish? Did my nurse really turn into a lizard? I was out of it to say the least.  When I woke for the final time, I was extubated. It was explained to me that I went into acute hypercapnic respiratory failure with pneumonia, Acute Respiratory Distress Syndrome (ARDS), and suffered a collapsed lung as well as a staph infection. I was intubated, and ventilated, but this had failed. Exhausting all other options, my doctors placed me on ECMO, however I was still declining and needed a chest tube due to the collapse of my lung. When I learned what I had been through, it was a shock. Every single fiber of my being was changed. I owe my life to the team who saved me- and to ECMO. I am now working in an Emergency Room in Nashville, helping and empathizing with patients everyday and have worked in hospitals for almost 2 years. I am working towards my degree in medicine and hope to one day be a critical care physician. I am so thankful that I am here to share my story and let you all know- it gets better, and you are NOT alone."

"My name is Maria. I was 38 years and 91 days old when I needed ECMO to sustain life. I had fainted at physical therapy and after an xray and bloodwork they said there was a blood clot that they were going to attempt to remove via interventional radiology. I had a similar experience near to date exactly 9 years earlier, a blood clot had developed post head trauma that they removed via interventional radiology. Its a "twilight" procedure- Im awake and watching the screen. My final words "Oh, thats not good..." and everyone stopped. They asked for clarification but I couldn't find the words to describe what wasnt good, so they continued. I coded. 45 minutes of CPR and hooked up to ECMO. This was early Tuesday morning. I woke up in the middle of that next night. I was intubated and very confused. I tried to sit up and there was a nurse next to me who pushes me back down and tells me No, I cannot sit up. I bend my leg and she straightens it. I dont understand why this nurse cant explain what is going on. I lift my arm up and motion for something to write with - she hands me a sharpee and a piece of computer paper. I still have these notes- all of the notes. I Eventually was given a proper writing utensils and clipboard for the paper but not before this most awful way of waking up not being able to communicate or understand what was going on. They said I pulled the tube out, but I KNOW this isn't true. We later learned I extubated myself with my tongue as my hands were tied down..that comes much later and at a different hospital. I feel the tube coming out and I black out and when I wake up, again, there's a nurse digging into my arm with a curved needle - it hardly looks like a medical procedure as our eyes lock and I can still feel her digging. I look away and realize the good news is the tube is out of my throat.

It didn't take long after I got out of the hospital that I started to realize the lasting effects of ECMO and the response I got was aren't you grateful to be here... and well, yes I'm happy to be here but I can't feel the lower right side of my abdomen or my right quadricep. Or, the pain in my right hip that occured when they determined I needed to go back on ECMO (which I needed to give my consent for and at this point in the journey I was deep into disassociation presenting as roughly 6-8 y/o. I would not give my consent until I asked my mom, who had left the hospital not long ago. I absolutely waited for her to come back 20(?) minutes later to assure me the doctors needed to put me back on ECMO. When the doctor asked why I needed to wait for my mom my response "Im pretty sure Im not in the right frame of mind to make that decision". I didn't trust them or myself). Now the 2nd time, they did the hook up right in my room. Surgeon on my right and on my left doing their thing on either side of my groin and about 4 nurses(?) In the room. I was feeling pretty vulnerable. It felt awfully quiet and given the time of year, I made a genuine request for Christmas music to which they happily put it on for me. Then, they flipped ECMO on and all of my muscles contracted. It was gruelling as my right leg torqued outward. I was able to get every other muscle to let go by clenching and releasing from my jaw to my toes...but not my right leg it stayed clenched. I begged for mustard, it can help release Charlie horses and thats all I could think this felt like. It didn't work. I was cold- my teeth were chattering before I asked for a blanket. That was an intense night. My very thoughtful aunt had brought me a book- a children's book called I Am Peace that helped get me through that night. By the morning my leg had "let go" but my right foot (ECMO boot) pointed outward and I dont think I knew what had happened to my hip until weeks later when I was able to get out of bed, again. Now, it clicks and pops like the knees I beat up as a college softball catcher.

Ive tried to have both issues looked at by a doctor and felt like I was talking to a brick wall. This led me to trying out more traditional eastern medicine solutions like reiki, massage, cupping, and acupuncture. Strengthening exercises have helped with the pain in my hip but not the clicking/popping. The numbness in my quad and abdomen turned to pain. It took about 1.5 years for me to connect dots to try and have a massage therapist do fascia work on my scar tissue- which are their own pieces of (art)work - like tiny pockets or mini belly buttons that smell accordingly after 24 hrs. I showed a physical therapist the scars ~6 months post event and they said something about considering plastic surgery 😂 my mom (a retired nurse) had done all my wound care and not once did she mention plastic surgery but it's my mom, maybe she was being nice- and ya know, thankful I'm still alive. I haven't gone out of my way to show anyone else.