April is Organ Donor Awareness Month and Courtney Ferriera wants to spread the word, crediting her new, vivacious life to her organ donor, Peter.
Fresh out of graduate school and enthusiastic about educating, Ferriera was a teacher in the Santa Barbara School District. She worked with 5th-grade special-education students. She was healthy, happy, and engaged to the man of her dreams. Then, while working one day, she began struggling to breathe and winced from excruciating back pain, but managed to drive herself to the emergency room. “They took an X-ray and told me my lung was 50 percent collapsed,” she said. “They put a tube in and fixed it, but they had no explanation.”
With little idea of what was to come, two months went by. Then it happened again — the same lung collapsed. The doctor suggested a procedure where the lining of the lung is “roughed up” so it doesn’t collapse. “It sounded so gnarly, but if that’s my only option I’ll do it,” Ferriera said. But while the surgery was underway, pink lesions surprised the surgery team; they were all over Ferriera’s lungs. “They knew it wasn’t cancer,” she said, “but they didn’t really know what it was.” A biopsy and a week of waiting later, Ferriera was diagnosed with lymphangioleiomyomatosis, a rare degenerative lung disease.
“My doctor was reading a printout from the Internet to tell me about the disease because he had never heard of it,” Ferriera explained. An uncommon condition, the medical community did not know much more about it than Ferriera herself did. According to Ferriera, they do have some ideas: It could be estrogen driven, for example, since it only occurs in women. But this knowledge void and lack of potential treatment stripped Ferriera of hope. “He was basically reading me my death sentence — I had three to five years to live; it’s progressive and aggressive, and will slowly take away my capacity to breathe,” she said.
Only 29 years old, Ferriera said, “The whole thing did not feel real. I went into angry mode; I didn’t think this could be happening to me. I was so young, my husband and I weren’t even married yet.”
The doctors scoured information for options. There were none. Ferriera and her mother scoured the continent for hope. That too brought few results. “My mom sent me to all these amazing doctors all over the country and in Canada,” she said. “Nothing worked.”
Meanwhile, Ferriera’s whole life changed. She married her fiancé, Mike. “My wedding day was beautiful except I had to stop and catch my breath while walking down the aisle,” she remembered. Shortly afterward, she had to quit working because she had no stamina. Her other lung was now punctuating her existence with collapses. “I was in the hospital every other week,” she said. The doctors were reluctant to perform the same surgery on that lung, because it would make her a less likely transplant candidate. But the collapses were relentless, and they finally performed the surgery as a last resort. “My whole world crashed in,” Ferriera summed up.
At the end of 2007, Ferriera was tethered full-time to an oxygen machine. In 2008 she was in and out of the hospital almost constantly. Infectious bugs took up residence in her lungs; she suffered from a chronic cough. Unable to drive or even shower on her own, her mom and husband served as full-time caretakers. “My mom would climb into the shower with me and wash my hair,” said Ferriera.
But a glimmer of hope managed to surface as her independence, health, and happiness plummeted. She was evaluated for the transplant list. This was no easy feat — she was interviewed by doctors to ensure she was capable of undergoing the operation. She was interviewed by the surgeon, and tested by a cardiologist. Even her mental stamina was tested by a psychologist. “You have to have the mental ability to go through something like that; you have to be a fighter,” said Ferriera. “I’m a fighter.”
Once on the list, a transplant is far from guaranteed. It’s a national list monitored by the United Network of Organ Sharing. “Based on your tests and evaluations, you get a score,” said Ferriera. “Basically, the higher your score the more sick you are. When I first went on the list, I was a 39, and as I kept getting worse my score crept up.” At the time, she had no idea she would soon reach a score of 99 out of 100.
Though 39 does not seem that high on a scale of 100, Ferriera contends she didn’t think she could feel much worse at that point. “It’s amazing how sick you have to get to actually be eligible,” she stated. “I wanted to stay hopeful, so I’d ask the doctor every week what my chances were. He tried to keep me positive.”
But the tactic he used to create positivity also created confusion: “He said New Year’s Eve was a good time for donations. It was so sad because in some respect I was hoping for someone to pass, but I felt so bad that I was even thinking that. It was this weird dichotomy, I felt so torn. I kept wondering how this was fair. There was so much emotional turmoil I went through to try to stay positive and want to survive. What if I was supposed to die?” said Ferriera.
Ferriera’s mother and husband used other tactics to promote positivity. Confined to the house and unable to move, her husband would carry her to the car for hopeful excursions. “My mom would try to get me out every few days and drive me around so I could see nature — I was so sick of being stuck inside. All I had was one window. You can only read so much and do so many puzzles. I started making jewelry when I was sick so that was fun. I read a lot of books, watched a lot of TV. But I just felt so stuck, it was maddening,” said Ferriera.
But somewhere along the line, all the pain and fear gave way to a sort of resignation. “When I was sick it became everything for me to believe that there was a greater power. As I got sicker my outlook on life became brighter. All of my burdens were totally lifted. Nothing material mattered. What mattered was having friends and family, support, my dogs. I was okay with things no matter which way they turned. My best friend would come over and we’d sit and write down all the things we’d do when I got well — that was something to look forward to. But I kept telling myself if I don’t make it, I’m okay with it,” said Ferriera.
Then, the Tea Fire happened in November 2008. “After that there was a turning point” she said. With her own home evacuated and many of her friends’ houses destroyed, she said, “Anxiety totally tipped me over the edge, I got so sick.” She was stripped of her unencumbered mobility and forced to use a wheelchair, she had two oxygen tubes — one from a constant compressor, the other a tank. Her dependence was so compulsory that she had to move in with her mother who could be her around-the-clock caretaker, “She has a two-story house — my husband carried me to the bedroom upstairs, and I never left that bedroom. That’s the point where my doctor here called down to UCLA and said I needed to be in the ICU,” said Ferriera.
This would seem like a hopeful development. At least she would be ready for any organs once they were available. But it was quite the opposite. “The doctor was telling my family I wouldn’t make it — I was too weak to even have a transplant, and there was no donor. My score by the time I was admitted to the hospital was 99,” said Ferriera. She slipped into a coma. After four years of struggling, she was too weak to have the transplant — and unconscious. “My family was freaking out,” she said.
But while she was in a coma the medical staff put her on a breathing machine. It pumped her full of oxygen, then extracted it to remove the carbon dioxide. The intensity of the machine woke her from her coma. “I felt good, like I had just had the deepest sleep. I hadn’t slept well in years,” she said. Hopeful, the doctor came in asking questions to test her mental state — mostly about her dogs. “I was answering them all, feeling pretty good. The doctor said if we got organs and I stayed conscious, I could get a transplant,” she said.
Now it was just a waiting period. Afraid to hope, afraid to fall back asleep, Ferriera just lingered. Then she said, “My nighttime nurse came in all bubbly with her clover earrings and other St. Patrick’s Day stuff and says, ‘You’re going to get your lungs tonight! You’re the first one on the list!’ She came back later and apologized, sorry if she got my hopes up, knowing she couldn’t make promises.” Ferriera added, “But I had this feeling that it was going to happen tonight. That same night the nurse left the room and my mom fell asleep in her chair, I was just laying in the bed texting my best friend in Hawaii — I couldn’t really spell words, but I wanted to make sure all my friends knew I loved them. I wanted to be connecting with people I didn’t get to see. My sister hadn’t made it to the hospital yet, so I was trying to communicate with her. It was about 1 a.m. in the morning and I heard a chopper coming onto the roof of the hospital. I prayed to God — please let those be for me. I just knew everything was going to be all right.”
Ferriera continued, “Thirty minutes later the nurse comes running in screaming to my mom, ‘Mom! We’ve got lungs!’ I have never seen my mom move so fast. I just melted with relief. It was unbelievable. I just kept asking if they were sure.” With three previous false alarms, the reality of life-saving lungs seemed too good to be true. But it was true. “I was finally going to move on from this chapter,” she said.
The surgery was successful, the recovery period rigorous. “I think that was the hardest part of the whole thing,” Ferriera said, “My chest was bound in this Velcro thing, like a straightjacket, and I had two tubes draining. They don’t take you off the feeding tube until you can swallow — so I had to go through a swallowing test. This whole gnarly series of events had to happen. I couldn’t walk anymore because my muscles atrophied so I had to learn to walk again. I had to breathe on my own.”
But countless tubes, breathing machines, and operations later — Ferriera has come a long way. “Now I don’t have any limitations. I snow ski, I hike every day, I play tennis, and I do Pilates twice a week. There’s something about nature that makes you feel so good, and now I can’t get enough of it. My doctor says not to be in the sun because of my anti-rejection drugs — I just wear a lot of sunscreen,” she laughed. A former asthmatic, Ferriera had lived her life to this point with “an inhaler always in hand,” she said. “When I decide to go on a walk, I have to remind myself that I don’t have to take my inhalers anymore. I can do so much; I’m so strong now. It’s a trip to see where I came from. My whole life has changed.”
This adjustment was a thrilling one. Ferriera had to, essentially, relearn how to experience independence and mobility. “The first time for everything was so exciting. When my husband and I went to play tennis for the first time I was so overwhelmed. Driving again was even exciting, I felt this whole new sense of freedom — it was like I was 16 again. I can go to the store if I want!” said Ferriera.
Amazed at her change in outlook, Ferriera said, “My husband and I never fight about anything. Life is so different. It’s a weird blessing. This is what life is about, and that’s what I’ve learned, is that life isn’t about making the most money or having the best job — it’s about enjoying each moment and living for each day rather than for a point in the future. It’s so easy for someone to say that but when you feel it, it just really clicks.”
Ferriera is no longer able to work in a classroom because of her compromised immune system, but she is still doing what she loves through private tutoring. “Right when I finished my master’s, I got sick, so I never thought I would be able to really do what I wanted to do. It’s great.”
Despite her newfound happiness, Ferriera is not unaware of the sacrifice. “I stay in contact with my donor family. I wrote to them a couple months after my surgery. They wrote me back and sent me a photo of my donor — Peter.” Peter was a Bakersfield man who passed away after suffering a brain aneurysm. “He’s become a huge part of our family,” Ferriera said. “We’re always praying for his family and giving toasts to him. He’s a part of my life. His family and I write letters. Both of his parents are in the education field, his dad was a special-education teacher and his mom is a librarian, so we had that in common. I send them pictures of me and my dogs — show them how I’m doing and how their gift of life has changed my whole life.”
This St. Patrick’s Day marked the two-year anniversary of Ferriera’s new lungs, and her new life. With this fresh start as motivation, Ferriera is passionate about Organ Donor Awareness Month. “The families of people who have donated and those who have received have a whole new life. They’re grateful knowing that Peter saved five people’s lives on the same day he saved mine. It’s a tragedy, but also a blessing,” she said. “There is such a shortage of donors.”
Ferriera has some practical advice for those interested in organ donation. “When you renew your license, you have to renew your organ donation,” she said. But even a registered organ donor can have his or her decision superseded by the family, said Ferriera. “Talk to your family about it,” she urged.
For more information on organ donation in California, visit donatelifecalifornia.org.