By Alyce Collins
DOCTORS told this woman’s parents that she wouldn’t live past TEN-YEARS-OLD due to CYSTIC FIBROSIS but in a twist of fate she survived and managed to delay a lung transplant until she was TWENTY-EIGHT.
Elizabeth Dolan (28) from Kansas, USA, 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 the time they had with her because they didn’t think she’d live past 10 years old. Elizabeth’s parents tried to give her a normal upbringing, despite the constant hospital stays and IV antibiotics.
When she was 18, tests revealed that Elizabeth had developed Burkholderia Cepacia, a bacterium found in damp soil and onion skin which is very dangerous for someone with CF who has compromised lung strength. The bacteria can cause the lungs to decline dramatically.
Elizabeth was excited to live a normal university life, but unfortunately, her health began to deteriorate, leading her to withdraw from university in Missouri and later move to Palo Alto, California. In 2016, she received specialist help to delay the need for a lung transplant by strengthening her body through pulmonary rehabilitation, which included breathing treatments and chest exercises.
Unfortunately, by 2018, Elizabeth’s health had deteriorated too much, and she needed constant supplemented oxygen. After stabilising her health and delaying a transplant for three years, Elizabeth was put on the transplant list in December 2018, before receiving the call that she had a match. Elizabeth underwent a bilateral double lung transplant on February 1, 2019 and received her second chance at life.
Due to the many years that Elizabeth spent trying to build up her strength, her recovery was faster than anticipated, needing just nine days in hospital after receiving her new lungs. Elizabeth wants to encourage more eligible people to sign up to become an organ donor because of the many lives saved by organ donation each day.
“I was diagnosed with CF at the age of four months due to failure to thrive,” said Elizabeth.
“My parents were devasted. Finding out their youngest daughter had a life-threatening chronic illness was like a punch in the gut.
“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.
“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.
“Near the end of secondary school, when I was 18, I received a call from my nurse saying that my sputum culture came back positive for Burkholderia Cepacia. Doctors always said that I would have different bacteria, but that was the one they hoped I’d never have.
“It’s dangerous for someone with CF and only three per cent of people with CF get it. I didn’t realise it then, but my life was completely changed, whether I was ready or not.
“The bacterium is drug resistant and 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.
“I went to university as I wanted to be like other 19-year-olds and have the quintessential university experience. During my second year, I had to withdraw and move back home as my health began a slow and steady decline.
“In 2014, my family and I made the decision to move to a new city which had better health facilities, so we moved to California which provided me with a better quality of life. 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 stabilise my health and delay the transplant.
“Over the next three years I was able to gain weight and stabilise my lung function.”
Elizabeth received the call to say she had a successful donor on January 31, 2019, before undergoing her bilateral lung transplant the following day, spending less than 60 days on the transplant list.
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.
“When I was listed for a transplant, I was so relieved and ready. It was also difficult because my health was declining, but for me to survive another person would be dying, which is a confusing feeling,” said Elizabeth.
“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. 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.
“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.
“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.
“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.
“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 so that I would be strong during and after surgery.
“I would say some of the difficulties post-transplant are adopting a whole new lifestyle. 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.
“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.
“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.
“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.”
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