Catherine Hughes' Story

“You have to keep fighting to get to the other side, because the other side is so much better, even better than you could ever dream of,” said Catherine. “I love the feeling of being able to breathe, and to have the energy to do what I want when I want to. I finally feel free.”

Catherine Hughes at the driving rangeLast February, Catherine Hughes was watching television at home when she suddenly felt a “pop” in her lung.  “I thought I was having an allergic reaction because I started to feel my throat closing up,” said Catherine. “When an EpiPen didn’t help, I called 911. By the time the ambulance came, my oxygen level was down in the 70s.  I was brought to the emergency room where they put me on life support and told my parents I wouldn’t be leaving the hospital unless I got new lungs.”

Catherine had suffered a pneumothorax (lung collapse), a complication of end-stage cystic fibrosis (CF).  Diagnosed with CF at birth, Catherine had spent her 32-year life boldly confronting the challenges of this progressive, genetic disease that causes persistent coughing, lung infections and the eventual loss of lung function.  

“I never had bad CF symptoms until I was in college, when I started to get shortness of breath and feel tired all the time,” said Catherine. “I also was on IV antibiotics all the time to treat bouts of pneumonia.”

Months earlier, Catherine was placed on Trikafta, the first triple combination therapy available to treat patients with the most common cystic fibrosis mutation.  Although the breakthrough medication increased Catherine’s lung function by ten percent, her CF symptoms continued to worsen.   

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The evening her lung collapsed, Catherine was sent to NewYork-Presbyterian/Columbia University Irving Medical Center, where she underwent a pleurodesis procedure to halt the continuous fluid buildup surrounding her lungs and chest wall.

Catherine was sent home, but she was feeling progressively worse.  One week after her lung collapse, she went back to the hospital and was found to have two dangerous infections, the flu and pneumonia, that threatened her already compromised condition.  

In the medical ICU, Catherine was placed on extracorporeal membrane oxygenation (ECMO), an advanced device that acts as a temporary artificial lung and delivers oxygen to the patient when the lungs are unable to do. At this point, it was evident that Catherine would need a double lung transplant and the ECMO was used to help bridge her through until that transplantation. For patients with CF and other advanced lung diseases, transplantation can prolong and dramatically improve quality of life.

Catherine did not hesitate to agree to this life-altering procedure. “I wasn’t scared to get a transplant,” said Catherine. “I wanted to live, and I knew I had to fight for my life.”

Fortunately, NYP/CUIMC is home to the Center for Advanced Lung Disease and Lung Transplantation, one of the top lung transplant programs in the country.  With a reputation for clinical expertise and a rigorous commitment to excellence, the Center offers innovative treatments that allow patients to live longer and wait for a transplant despite their severe illness.

By early March, COVID-19 had become a crisis in New York City, and Catherine was still in the medical ICU at NYP/Columbia where the first COVID-19 patients were being treated. She found herself literally the eye of the storm, with practically no lung function and in need of new lungs, while a pandemic that attacked people's lungs was on every side of her.   She was soon moved to a non-COVID-19 unit to protect her from interacting with staff who were caring for patients with COVID-19.  

The wait for her new lungs was long. The 46 days that she spent on ECMO seemed forever. “The ECMO machine is huge and I couldn’t move or eat while on it,” said Catherine. “To make matters worse, I couldn’t have any visitors due to the COVID-19 pandemic, so I didn’t see my family or friends the entire time.”

“What kept me going was the amazing support and dedication of the Lung Transplant team,” added Catherine. “They visited me two or three times a day, and they sat at my bedside to keep me company, which was so comforting.”

“Patients face incredible challenges once they require ECMO as a bridge to lung transplantation and the medical ICU team works incredibly hard to provide support through them,” said Cara Agerstrand, MD, Director of the Medical ECMO Program.  “We have a biopsychosocial approach to patient care. From the nurses and nurse practitioners to the physical therapists, our team wholeheartedly supports our patients to and through transplantation.”

“We are totally dedicated to our lung transplant patients,” said Dr. Sonett. “Our doctors, nurses and the entire ECMO team adopt these patients as if they are family.”

By early April, at the peak of the COVID-19 pandemic and at quite possibly the busiest COVID-19 hospital in the world, Catherine's donor lungs finally arrived.  Joshua R. Sonett, MD, Chief of General Thoracic Surgery at NewYork-Presbyterian/Columbia University Irving Medical Center, performed Catherine’s double lung transplant, an eight-and-a-half-hour surgery that required her going on heart bypass. 

“When I woke up my oxygen level was 99-100% and I was breathing on my own, which felt amazing,” said Catherine.

“Catherine’s surgery went very well, with no complications, which is a testament to commitment of the team and the hospital to take of each and every patient,” said Dr. Sonett. “The Hospital could have easily said no to such a complex and resource-intense procedure while we were being crushed with COVID-19, but they supported us all the way.”

The day after her surgery, Catherine was off ECMO.   She returned home from the hospital 14 days later and began an exercise program to strengthen her new lungs.

Transplantation is a life-altering procedure. Although Catherine will need life-long immunosuppressant medications to keep from rejecting her new lungs, the Lung Transplant team expects her to enjoy a good quality of life.

“Catherine can do all of her usual activities as well as light exercise without shortness of breath and without needing oxygen,” said Hilary Y. Robbins, MD, member of the Lung Transplant team who is board certified in Internal Medicine, Pulmonary Medicine, and Critical Care Medicine.  “Patients with CF have the best long-term survival after transplant, so we anticipate many years of good health.”

“At Columbia our survival for CF transplant far exceeds the national numbers,” said Dr. Sonett.  “I would say Catherine has a 70 percent chance of these lungs going well over 10 years. We have cared for patients with CF lungs who are now past 25 years with double lung transplants.”

“Life is so much easier and enjoyable now than it was when I had CF lungs,” says Catherine. “I’m taking fewer medications than before, and I’m no longer coughing or wheezing. Before the transplant, I couldn’t even answer the door without needing supplemental oxygen. I now have the energy to take Henry, my 4-year old Cavapoo, on four-mile walks, and go trick or treating with my two nieces.”

With her remarkable journey behind her, Catherine has advice for others with advanced lung disease who need a lung transplant. “You have to keep fighting to get to the other side, because the other side is so much better, even better than you could ever dream of,” said Catherine. “I love the feeling of being able to breathe, and to have the energy to do what I want when I want to. I finally feel free.”

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