Wednesday January 25, 2017

'Breathing feels brand new': Ontario woman lives six days without lungs

Melissa Benoit and her daughter.

Melissa Benoit and her daughter. (University Health Network)

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Doctors say Melissa Benoit had hours left to live. 

Last April, the Burlington, Ont. woman was dying in a Toronto hospital. Benoit, who has cystic fibrosis, had developed a severe lung infection and it was spreading to other parts of her body.

While it had never been done before — as far as doctors at Toronto General Hospital (TGH) knew — they came up with the idea to remove both of Benoit's lungs. Doctors hoped this would allow her body to start to recover from the infection.

Benoit's family gave doctors permission to go ahead with the procedure. With the help of machines, Benoit spent six days without lungs. Then, she finally got the lung transplant she needed. 

Melissa Benoit with her surgical team

Melissa Benoit with some members of her surgical team. (L to R): Dr. Shaf Keshavjee, Melissa Benoit, Dr. Marcelo Cypel and Dr. Tom Waddell. (University Health Network)

A report on Benoit's case was published in the Journal of Thoracic and Cardiovascular Surgery

Today, Benoit — and her new lungs — are doing well. She told As it Happens guest host Helen Mann about what it was like to go through this procedure. Here's part of that conversation: 

"Without those donor lungs, I wouldn't be here today." - Melissa Benoit

HELEN MANN: When you talk about [doctors] removing your lungs, normally — one would think — they have another set of lungs ready to put in you. Of course, that's not the case here. Tell us about this procedure and what was done to keep you alive.

Melissa Benoit

Melissa Benoit, right, celebrates her birthday with her husband and daughter. This picture was taken months after she had a lung transplant. (Melissa Benoit via University Health Network)

MELISSA BENOIT: The thing that is unique is the fact that they removed my lungs without me being on the transplant list. They had no donor lungs to replace my diseased, end-stage lungs. The reasons I couldn't go on the transplant list was because I became septic. That's when the infection takes over the bloodstream. You are not eligible for transplantation when you are in sepsis. The option for them was, 'Let's remove the source of the infection  — which were my lungs  — and we'll see if the sepsis gets better. And if it does, then we can put her on the transplant list and wait for lungs.' That's what happened. The sepsis resolved fairly quickly once my diseased lungs were removed. I sat for six days in the intensive care unit in a medically-induced coma waiting for a suitable pair of donor lungs to come my way. Six days later they did. I am thankful for the decision for that donor to register and that family to honour their wishes. Without those donor lungs, I wouldn't be here today.  

HM: During those six days, while you were waiting for those lungs, as you said, you were unconscious. But, you were being kept alive by machinery. How did that work?

" I had these two circuits, both working at the same time, to keep me alive." - Melissa Benoit

MB: I was attached to … a system that has a pump. It takes the place of your heart. [It] pumps the blood out and removes the carbon dioxide — which is dangerous — and then re-oxygenates the blood and then pumps it back into the body. After the double pneumonectomy, I then needed something to perform the act of lungs. So, they hooked me up to the machine called the Novalung. This system has no pump. It relies on the heart to be the pump. It relies on the heart muscle to be strong enough to use that pump action. It pumps the blood out of the body, goes through an oxygenator, which filters in fresh oxygen to the blood, and then it's pumped back into the body. So, I had these two circuits, both working at the same time, to keep me alive.

HM: How, during this whole time, did doctors know that your brain was being kept alive enough to allow for a full recovery?

MB: That was a little touch and go for a while. They weren't actually sure. We did the double pneumonectomy procedure, and in the ICU, I was not responding to painful stimuli. Even when someone is unconscious, you have these fundamental reflexes and I was not having them. So the question was: does she have the brain function to proceed with the transplant? Or, are we done here? … My mom actually tried to get me to stick out my tongue because I wasn't strong enough to squeeze hands … So, she kept yelling in my ears, 'Melissa, if you can hear us, stick out your tongue. Just stick it out.' She repeated this over and over again. She said it took a good twenty minutes, but there was the very faintest hint of me trying to open my mouth and stick out my tongue. That showed the doctors that I did have brain function.

Living Without Lungs 20170125

Melissa Benoit, left, who has cystic fibrosis and her mother Sue Dupuis share a happy moment at her home in Burlington, Ont., on Friday, January 20, 2017. (THE CANADIAN PRESS/Nathan Denette)

HM: How does one react to learning, after all of this, that you've been kept alive by machinery for six days — with no lungs?

MB: I actually didn't believe anyone. I'm a nurse, by vocation, and I had never heard of this before. So, it must not exist. How can you possibly take somebody's lungs out and they can survive? It made no sense. I will be honest. I'm not even sure to this day I fully realize what happened. It just seems so science fiction. But, it worked and it gave me the second chance that I so desperately needed.

"Breathing feels brand new. I've never experienced breathing in my entire life." - Melissa Benoit

HM: What does breathing feel like now?

MG: Breathing feels brand new. I've never experienced breathing in my entire life. It was always a struggle. It was always met with resistance. It always felt like I was breathing through a straw. The very first time I was taken off the ventilator and my tracheostomy was removed was the very first time I took a deep breath. I could feel the air rush into the very depths of my lungs. It was a feeling that I had never experienced before. I don't think anyone will ever appreciate how I can describe it, except those who have lived it. It felt amazing.

This interview has been edited for length and clarity. For more on this story, listen to our full interview with Melissa Benoit.