Doctors told this woman’s parents that she wouldn’t live past 10 due to cystic fibrosis, but in a twist of fate she survived and managed to delay a lung transplant until she was 28.
Elizabeth Dolan, now 28, from Wichita, Kansas, was diagnosed with cystic fibrosis (CF) at just four months old when she stopped gaining weight due to the life-threatening chronic illness.
At the time, doctors told Elizabeth’s parents to enjoy what little time they would have with her.
Elizabeth’s parents tried to give her a normal upbringing, despite the constant hospital stays and IV antibiotics.
She made it to her tenth birthday, and her eleventh. Elizabeth managed to maintain a reasonably normal life, all the way up until age 18, when her lung fluid tested positive for the one species of bacteria CF patients dread: Burkholderia Cepacia.
Elizabeth tried to carry on as usual at college, but the bacteria was eating away at her lung function and, by her second year, she had to withdraw. ‘Normal’ life seemed to be slipping away.
But then she got her second chance, in the form of a double lung transplant in February.
At 28, Elizabeth is better than she has been in years, and leaping right past her prognosis.
Elizabeth Dolan was not expected to live past 28 because she was born with cystic fibrosis. At 28, she has a new set of lungs and a new lease on life in California
When doctors noted that Elizabeth was ‘failing to thrive,’ shortly after birth, they ran a battery of tests to identify the cause.
What they determined was the news that no parent wants to hear. Their daughter’s cystic fibrosis meant, doctors told them, that she was unlikely to live to her teenage years, let alone to adulthood.
‘My parents were devastated. Finding out their youngest daughter had a life-threatening chronic illness was like a punch in the gut,’ Elizabeth said.
‘How do you reconcile the life you imagined for your child to the one you’re faced with now? The doctors said that I wouldn’t survive beyond primary school, so they should enjoy the years they had left with me.’
Despite biannual trips to the hospital to get IV antibiotics, Elizabeth managed to spend her childhood much the way her peers did.
‘My parents were determined to give me a normal childhood, so I wasn’t treated any differently from my siblings or my peers in school. The only thing different was that I had a lot of doctor’s appointments and twice a year I went to the hospital for IV antibiotics,’ Elizabeth said.
After she was diagnosed when she was just four months old, Elizabeth’s family did everything they could to give her a normal life
But on the cusp of adulthood, the decline her family had dreaded since her diagnosis began in earnest.
At 18, just as she was finishing high school, Elizabeth contracted Burkholderia cepacia.
‘Doctors always said that I would have different bacteria, but that was the one they hoped I’d never have,’ she recalls.
B. cepacia is a rare, antibiotic resistant species of bacteria that’s particularly dangerous for people with CF.
Any bacterial infection can be deadly for a CF patient, but B. cepacia is particularly dangerous – but only to people with the disease.
B. cepacia is rarely hazardous to most people and rarely the cause of infections in CF patients, accounting for just three percent of them.
But when it does strike CF patients, it’s highly lethal.
‘I didn’t realize it then, but my life was completely changed, whether I was ready or not,’ said Elizabeth.
Far beyond doctor’s expectations, Elizabeth managed to stay infection free and fairly independent until she was 18. Pictured here with her beloved dog
Periodically throughout her life, Elizabeth has needed supplemental oxygen (left). Her dog sometimes accompanies her on trips to the hospital at Stanford, near which her family moved in 2016 so Elizabeth could have better care (right)
‘The bacterium…can either cause an immediate and drastic lung decline, or a steady decline over many years. I was lucky as it was the latter for me.’
She’d been excited to experience life as a normal college student, but CF and B. cepacia didn’t allow that for long.
Elizabeth had to move back home in her sophomore year.
Her decline was relatively slow, considering the bacteria that was wreaking havoc on Elizabeth’s lungs, but it was bad enough that her family wanted to be closer to the best medical care for her disease possible, so they moved to Palo Alto, California.
In 2016, she started seeing a Stanford University specialist to help to delay the need for a lung transplant by strengthening her body through pulmonary rehabilitation, which included breathing treatments and chest exercises.
Elizabeth has to take more than a dozen pills every day to keep her CF in check
With her team of doctors, Elizabeth was able to delay her transplant by three years, but by December 2018, she got on the list. Incredibly it took just 60 days for a pair of donor lungs to become available, and Elizabeth rushed to the hospital to get a transplant the next day
‘At my first appointment, the pulmonologist thought he’d have to refer me for a transplant straight away, but due to his faith and determination in me, he helped stabilize my health and delay the transplant,’ Elizabeth said.
Elizabeth dedicated every ounce of energy she had to getting stronger, improving her lung function and putting on weight (a constant challenge for CF patients, whose illnesses make it hard for them to get proper nutrition).
Nonetheless, by 2018, Elizabeth’s health had deteriorated too much, and she needed constant supplemented oxygen. She was put on the transplant list that December.
‘When I was listed for a transplant, I was so relieved and ready,’ said Elizabeth.
‘It was also difficult because my health was declining, but for me to survive another person would be dying, which is a confusing feeling.
Elizabeth received the call to say she had a successful donor on January 31, 2019.
‘I was taking a nap when I got the call, so when the doctor said there were lungs available, I asked if he was joking,’ she recalls.
‘I was scrambling around my apartment trying to pack a bag while calling my parents and friends, telling them I got the call.
‘I never expected the call to come so soon and I didn’t have anything packed or ready.’
Elizabeth’s parents hurried to the hospital to meet her and snap a photo before the transplant
On January 31, 2019, Elizabeth arrived at the hospital excited for her transplant (left). The very next day, she had surgery and got her new lungs, waking up in a lot of pain, but happy
The next day, she underwent a bilateral lung transplant, having spent less than 60 days on the transplant list.
‘When I woke up from surgery I was in immense pain. I was intubated, hooked up to a breathing machine and IV pumps with several antibiotics. I was in and out of consciousness but could hear the voices of my nurses,’ Elizabeth recalls.
‘The only thing I remember from when my family and best friend came in to see me after surgery is their voices telling me how much they loved me and that I did great.’
As badly as she’d needed the new lungs, and as relieved as she was to get them, her recovery proved that all the hard work she’d done to delay transplant was not for nothing.
‘The average hospital stay is two weeks minimum, but I only spent nine days in the hospital after my surgery because I was doing so well,’ Elizabeth said.
‘I believe I did so well after surgery because I spent three years trying to get as strong as possible. I did pulmonary rehab before I was listed and while I was listed.’
The strength that Elizabeth fought so hard to build is what helped her recover so swiftly, and she admits that despite still having to be vigilant since her transplant, she has a much better quality of life than she did before surgery.
At first, Elizabeth still had a port in her chest and a long obvious seam where her chest was cracked
But she credits her years of pulmonary therapy with her unusually quick recovery
Now, Elizabeth wears the scars from her lung transplant surgery proudly
Of course, Elizabeth has had to make some adjustments since she got her new lungs.
‘I would say some of the difficulties post-transplant are adopting a whole new lifestyle,’ she said.
‘Now, I have to be careful about what I eat due to food born illnesses and I’m extra diligent about being around sick people.
‘Even catching a cold could be detrimental because I’m immunosuppressed. That’s why it’s so important for everyone to be vaccinated. You’re not only protecting yourself from illnesses, but you’re protecting the immunocompromised.’
Elizabeth is looking ahead to a longer, easier breathing life, but she never forgets that nothing – not even new lungs – can cure CF.
‘Even though I have new lungs, I still have CF in my other organ systems. Transplant is not a cure; you’re trading one disease for another,’ she said.
‘I wish I could say I don’t let CF hold me back, but it held me back when I tried to finish my degree, it’s caused me to cancel plans with friends and family or cancel holidays.
‘Growing up, there were times when my parents had to make the decision on what they’d sacrifice so they could pay for my medication.’
Elizabeth is grateful not only to her parents, who had to go through hardships to help her survive, but to the stranger she’ll never meet, who gave their lungs, and gave her years longer to live.
‘I want to raise awareness for the importance of organ donation and signing up to be an organ donor since it’s because of my donor and their selfless and extraordinary gift that I’m alive today,’ Elizabeth said.