Supporting Lupus Treatment With ECMO - Mailinh's Story
Today, Mailinh Nguyen is a typical high schooler in Virginia. She enjoys going to the gym and seeing her friends. But not long ago, she was very ill from systemic lupus erythematosus (called lupus). “I was experiencing a lot of fatigue, really heavy fatigue,” she remembers. “I could barely even go up the stairs without getting absolutely winded at school. And I was also extremely, extremely cold all the time,” she remembers.
With lupus, your immune system mistakenly attacks your body’s own healthy cells. “I had a flare up, which caused multiorgan system failure in my body,” remembers Mailinh. “And it mainly impacted my lungs. Which is why I was put on ECMO, to help support my lung function.”
Mailinh needed to stay in the hospital at UVA Health to treat her lupus. Her condition was so bad, her care team brought in ECMO, which stands for extracorporeal membrane oxygenation, to support for her heart and lungs. With ECMO, Mailinh was able to get the treatment she needed for her lupus, putting her on the road to back to normal.
Understanding Mailinh’s Lupus
Lupus is a chronic autoimmune disease. This means the immune system, which is your body’s way of fighting off germs, gets confused and attacks your own cells instead. It can cause a number of symptoms, including:
- Swollen joints and stiff or weak muscles
- Fevers
- Skin rashes
- Tiredness
- Light sensitivity
- Nausea, vomiting, or abdominal pain
We don’t know what causes it.
Lupus “flare-ups” happen when your immune system kicks into attack mode, causing symptoms to appear or worsen. For Mailinh, her lupus flare-ups were damaging her organs, especially her lungs.
How Can ECMO Help?
“It can be used as a bridge to recovery,” explains Jared Beller, MD, a heart surgeon here at UVA Health. We often call ECMO a "bridge" because it buys your care team time to treat the main problem while keeping you stable. “If someone has an opportunity to recover from the acute process that's causing their heart or lungs to fail, then they would be a good candidate for ECMO. Similarly, if they are not going to recover and they'd be able to receive a transplant, they would also be a good candidate. But there's certainly a lot of factors that go into it.”
It works through a three-step process:
- Small tubes are placed into large blood vessels to bring blood out of your bod
- Your blood goes into a special filter that acts like an artificial lung, adding fresh oxygen and removing carbon dioxide
- The machine pumps the oxygenated blood back into the body
"This machine's a very powerful tool. It can support both the heart function and lung function by putting oxygen into the blood and pumping it to the body. And it could be set up in two main ways, depending on whether we want to support both the heart and the lungs or the lungs alone," Beller highlights.
Recognized ECMO Expertise at UVA Health
UVA Health has been named a Platinum Level ECMO Center of Excellence by the Extracorporeal Life Support Organization (ELSO). “It's a relatively prestigious designation, which is a result of all the hard work that has been put in over the years,” notes Beller.
“I think our team of ECMO specialists is one of the best out there. Everyone is really engaged and interested in learning and quality improvement and process improvement. And ultimately what that translates to is a great outcomes for our patients.”
Supporting Mailinh & Family Through ECMO
Because she was in critical condition, Mailinh doesn’t remember some things from the start of her treatment. “I know that my family was informed and educated on the subject,” says Mailinh. “I remember one of my PICU nurse friends telling me that she brought my family into a separate room and clearly explained what was going to happen to me and the entire procedure.”
When she woke up, the team made sure she understood what had happened. “The ECMO specialist summarized the ECMO machine in very broad terms, so I wouldn't be scared. They said that ECMO was basically a machine that would function as my lungs, because my lungs were in such bad condition they needed some extra support.”
When Vincent's heart disease put him on the path to a heart transplant, ECMO helped get him to the finish line.
What Was Being on ECMO Like?
Mailinh recalls: “If you're scared, just know that it doesn't hurt at all. I had an ECMO cannula on the right side of my neck, and so it really limited my range of motion. The giant tube in my neck would take out blood from my body and then re-oxygenate it and then put it back in.”
“It really just feels like a tube that's attached on your neck. It doesn't hurt. And it looks scary, but it's actually doing you a huge favor.”
Coming home was a major milestone, but recovery took time. “The most helpful piece of advice from the team was to take it slow and not push myself too much physically so that I wouldn't overexert myself and potentially harm myself,” she says.
“I think the hardest part about coming back home was definitely the fact that UVA, honestly became my second home. Change is always hard for me. Even just moving from the PICU to the normal floor was hard for me, especially saying goodbye to all my PICU nurse friends that I made there. So, coming from a hospital setting back to my actual home was a really big jump for me, especially because I wasn't surrounded by the huge support system that I had 24/7.”
Today, she is back to "living life, honestly". She notes, “Now, I'm doing so much better. I'm able to do a lot of the things that I couldn't before.”
Advice for Others Facing ECMO
“I had really good support around me,” recalls Mailinh. “All of the nurses, doctors, and the ECMO specialists, they helped me cope with what I was going through.”
Her experience has given her a new perspective on how strong she can be. “ECMO has really impacted my overall outlook on life by showing me that everything really does work out, and that everything works in your odds overall. I overcame a lot of really crazy odds when I was in the hospital and on ECMO, and I think it’s showed me that there's nothing to worry about in the end,” she shares.
