Interviewed by Simi Juriasingani
Shillane Labbett was diagnosed with cystic fibrosis at eighteen months of age. After a relatively normal upbringing, her symptoms worsened throughout adulthood. Her disease culminated with a severe episode of hemoptysis (coughing up blood) and low blood pressure, which led to an emergency code being called. Shillane was put on a ventilator and she ended up receiving a double-lung transplant shortly thereafter. Since her transplant in 2005, Shillane has dedicated herself to transplant advocacy. I recently had the opportunity to talk to her about her experience.
Could you describe your experience with cystic fibrosis (CF)?
Shillane: CF is a genetic disease, so I was born with it. I was diagnosed at 18 months. The life expectancy of someone with CF at that time was about five years. That was a big shock. Not the best news really. My parents did an amazing job bringing me up. They were serious but not overly strict because they wanted me to do well and thrive. They were very careful with my medications, but my early childhood life was pretty normal. I had more absences than the average child, but I was able to go to school and go on field trips. I have lots of good friends and I played a few sports. I was able to have sleepovers.
By the time I was about 10 years old, I was still taking antibiotics, but they were no longer doing as much for me as they should. I started to have to go to the hospital for two to three weeks of every summer vacation, just to have IV therapy and get my lungs better for the next year. It affected my life but because I’ve not lived any other way, it’s easier to accept. When I was in high school, I was getting more lung infections and needing more IV antibiotics. By the time I was 18, I occasionally needed supplemental oxygen when I would have lung infections and be in the hospital.
After high school, I went to Queen’s University and I was able to earn my degree. I still missed lots of classes, but I managed. From there, I went on to become a pharmacy technician and worked full time at a hospital in Kingston. I had to go on disability in 2001. The last two years of work, I only had about 30% lung function. I was working full time and it was getting very difficult. By the end of the day, I was exhausted.
I was 30 when I went on long term disability and at 31, my lung disease really progressed and was declining rapidly. It was at this point that I began having issues with massive hemoptysis. It’s where your bronchial arteries rupture inside your lungs. The blood just starts pooling in your lungs and it’s like drowning on the inside, so you have to cough it up. I was rushed to the hospital with this condition and then, for two years after that, I seemed to be at a status quo. I was not getting any better or worse.
When did you find out you would need a lung transplant and what was the waiting process like?
Shillane: When my husband and I were on vacation in Halifax, I got very sick. It was terrifying. We said our goodbyes just before I lost consciousness and I had a massive seizure. Luckily, the ambulance arrived in time and I regained consciousness just before getting in. We were at Peggy’s Cove and they rushed me to Halifax, where I ended up having to stay for a couple of weeks to recover. When I came back to Kingston, my respirologist said it was time to have a formal assessment. They do a lot of tests to make sure that the rest of your body is in good shape and that you would benefit from a lung transplant. I had the formal assessment in November 2004, and then I was put on the list at the beginning of February 2005.
At the time, while waiting for a lung transplant in Ontario, you had to be within a two-hour radius of the transplant centre. Kingston is definitely not within a two-hour radius, especially in the middle of winter, to Toronto. My mom and I moved to Toronto. We rented a condominium and then my husband was able to join us. It was mandatory to attend respiratory rehab three times a week. You would go to Toronto General Hospital and work with physiotherapists there. You would do a stint on the treadmill and the bike. You’d do a bunch of upper and lower body exercises. They’re just trying to prepare you for the surgery and get you in your best condition that you can be in. Pretty much everyone in the room was on oxygen and we were not walking at a quick pace on the treadmill, just trying to move our muscles and get in shape.
I went to the first three rehab dates in February. After my first week of being on the list, I was getting extremely sick. I couldn’t breathe any longer with the oxygen I had and I knew that my needs would be better met if I went to the hospital. My husband drove me to St. Michael’s Hospital that weekend, where the CF program was in Toronto. I was waiting in the ER for a bed to become available on the CF floor. I was extremely lucky I was there. The bronchial arteries erupted. I started coughing up a bunch of blood. My blood pressure bottomed out and they called the code. Everyone came rushing in, they intubated me, put me on a ventilator, and I was moved to the ICU. The remainder of my 20 days on the waiting list were spent in the ICU on a ventilator. Due to my condition, I was moved to the very top of the waiting list. I was extremely lucky that the lungs came when they did because, even though I only waited 20 days on the list, I was very sick.
When did you find out you would receive a transplant and how did you feel when you found out?
Shillane: It was at 5:00 PM in the afternoon on February 23rd, 2005. My mom and I were in my room at that time and my husband actually had my pager. He was off at the mall getting me something, I can’t remember what, and we heard my nurse. He was in the hallway and he was on the phone. The next thing we knew, he came in my room and he said, “They have lungs for you.” We were just shocked. It was unbelievable. It was not like a feeling I’d ever felt or ever have felt again.
I was exhilarated and felt a huge sense of relief because I almost gave up at one point. I had a bit of a pep talk from one of the doctors, but I was really getting discouraged. I didn’t have a lot of fight left in me at that point. Now that I could see that light at the end of the tunnel, that’s what gave me the strength to continue.
Even though I knew how overjoyed I was, I knew there was someone that was not overjoyed. Some family had just been told that their loved one wasn’t going to recover. It’s very bittersweet. It’s hard. I’m so grateful to that family and to my donor and I will be grateful forever.
What was the recovery process like?
Shillane: My recovery, believe it or not, was pretty amazing. I was only in the hospital for 11 days. Some people have to stay much longer and then some people actually have to go to a rehab hospital afterward. Within a day or so, I was taken off the ventilator and two days after that, I was taken off the supplemental oxygen. The second day after my transplant while I was still on oxygen, they had me walking with a walker. I had chest tubes, and lines coming out of me every which way, but I was up walking with a walker with help from the physiotherapists.
I was in a huge amount of pain, but they’re medicating you for the pain because they want you to be able to get up and use your lungs. The most important thing is to get them pumping with blood by using them and doing cardio, even if it’s only a little bit, as soon as you can. The physiotherapist would come by two to three times a day and try to have you up walking. Even for people that don’t walk right away, they may have them doing exercises in their chair or in their bed. I was in a lot of pain, but just being able to breathe made everything so much easier. There’s an incredible amount of pain, but because something so wonderful happens afterwards, you are able to forget the pain.
Do you still feel the impact of the transplant in your day to day life?
Shillane: I don’t have pain from my transplant, but I definitely still feel the impact. When I received my lung transplant, I was given a 50% chance of living five years post-transplant and that’s basically what the statistics were saying at that time. I just celebrated my 15-year lung transplant anniversary, so I’m extremely happy. It is incredible to be given that amount of time.
Transplants are not a cure for cystic fibrosis or any disease. It’s basically trading your disease for something like a new disease. I’ll have to take immunosuppression drugs forever. I need those so my body doesn’t reject my lungs and with that, obviously, I’m immunosuppressed, so it’s much easier for me to catch colds, viruses, flu and even other illnesses like cancer.
Could you describe your emotional state now as it relates to being a transplant recipient?
Shillane: I’m extremely happy I’ve had 15 years, but I want to stay longer. I still have a little bit of that anxiety because, like I said, it’s easier for me to catch a number of different things. Even with the Coronavirus, COVID-19, it’s a little bit distressing that they’ve lost a handle on that. I still have a little bit of anxiety because I’m immunosuppressed. I have also actually had cancer a couple of times since my transplant so that’s a little worrisome. But we have a great network of people in the transplant group and we’re able to discuss our fears or anxieties, and it’s just so wonderful to have that opportunity.
Read about the rest of Shillane’s transplant journey and advocacy in Part 2.