ecmo-patient-stories

View stories from the loved ones of patients and patients themselves who were treated with Extracorporeal Membrane Oxygenation (ECMO) and Extracorporeal Life Support (ECLS). These emotional stories drive home the fear, pain and ultimate relief that many patients experience through life-saving extracorporeal support.

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Titou's COVID story

ECMO use Early in COVID Pandemic

My husband who never gets sick started with a headache and fever on March 4, 2020. He and I had just returned from a quick weekend getaway in NYC.

After 2 days, the fever continued, and he assumed it was the “just the flu”.

On Sunday, we went in to be checked out. Flu and Strep were both negative.

On Tuesday, his primary care office said to call back if fever continued until Thursday. On Wednesday morning, his fever was 104. A family MD friend suspected this was the new coronavirus. We called around trying to find a test. We then notified INOVA Fairfax (25 minutes home) that we were on our way with a suspected case of Covid-19.

This was the first day they had set up a triage area in the ED. We were provided masks (which was not a thing yet, though my car is riddled with dozens of masks in all shapes, sizes and patterns).

His temperature was high, and his pulse ox was 91%. They took him straight back – away from me without any good-byes.

After hours of waiting, I was told they were keeping him and testing him for “ya know…coronavirus” which was said in a whisper.

I turned around, walked out the door and screamed, crying uncontrollably.

After a brief update, I headed home in a trance, stopping at the store to pick up the last of the Lysol and hand sanitizer so I could spray down and disinfect our bedroom and bathroom, which he’d been locked away in for days.

That evening, they discovered pneumonia in both of his lungs. He mustered enough strength to text me. He was too short of breath to talk on the phone.

By the next day (Thursday), he was upgraded to the intermediate unit. The call I’ll never forget came a couple of hours later, less than 24 hours from when I had left him in the E.R. I was told they had to intubate him!

He had been tested that morning after a respiratory pathogen panel taken the night before yielded all negative results. Every nurse and Doctor I spoke with gave me a different answer about when they would have the COVID-19 test results back, 24 hours, 3-5 days, we don’t know…

"I knew it was his only option. I knew it was the final effort to save him. "

Amanda (Wife)

By Saturday, still no results and he was declining. His kidneys, liver, and right side of his heart. He was on paralytics, and they were proning him.

I was desperate by Saturday evening with no test results from Thursday morning.

I was calling the health department with his labs and searching the internet for new drugs I had heard about. I found a contact on the NIH trial website for this Remdesivir…I emailed and called and texted the guy in charge. I eventually received a return email that the trial was closed.

The call came 12 hours later that, he was positive. Strangely, a huge sigh of relief came over me-but now what?!
I was asked to come in and see him. He was paralyzed and proned. Everyone, include me, were in gowns, goggles, masks, and layers of gloves.

After an intense meeting with his team, I was told he had been approved for Remdesivir, but could take up to 48 hours to get it!

By Wednesday, he wasn’t getting worse, but certainly not better. ECMO - I knew what this was as a 28-year-old family member was on it at birth for 18 days, and my mother had been on it after a challenging open-heart surgery 2 years prior. I knew it was his only option. I knew it was the final effort to save him. It had to happen.

Within an hour he was cannulated, and his lungs were finally getting a much-needed break.

He was on CRRT (Continuous Dialysis), Lasix, and a gazillion other meds. The nurses would put the phone on speaker and lay it on his chest so we could talk to him. I asked every nurse on every shift to turn soccer on the TV for him.

His 3rd day on ECMO were his first signs of improvement. The next day he had a low-grade fever. He developed pseudomonas (a secondary infection in his lungs). They began to trial him off ECMO on day 5, but he was not ready yet. He was able to come off ECMO and be decannulated on his 7th day of ECMO!

Titou was only the 2nd person in the country to be on ECMO, so this was a huge triumph not only for us but for the hospital and team. We have learned that this was a very short period of time compared to other COVID patients.

We are so blessed and grateful to live in an area in the US where this level of care is available to us.

Without ECMO, our world would look much different. My girls would be without their dad, and I’d be a young widow.

By July of 2020 he was 100% recovered. The only after-effect has been some slight tingling and tightness in both hands.

He is a true miracle, in large part due to ECMO. He was furloughed from his job for almost a year.

Amanda (Titou’s Wife)