LIFE is hectic for any mum with an energetic seven-year-old boy, but for Lucinda Simpson, whose alarm goes off at 6am to remind her take her first pills of the day and continues throughout the day until 10pm, it’s even busier.
However, watching Angus tearing around their idyllic Tamborine Mountain cottage is something she spent years dreaming of.
Both Lucinda and Angus are medical miracles.
In 2005 at just 24 years of age, Lucinda became the first female in Australia to have a triple transplant and one of only 25 worldwide.
She was also told she’d never experience the joy of motherhood.
“It was classed as a rare procedure, and I think it still is because I don’t think they’ve done too many more,” she said.
When Lucinda was 12 months old her father wondered why she was salty when he kissed her and questioned the doctor.
They were devastated when she was diagnosed with cystic fibrosis and told the likelihood of surviving until she was five was not great.
When Lucinda reached five years of age, doctors told her parents outcomes had improved, and she might survive until her teens but might need a lung transplant.
Again, she made it through her teens, but at 23 her liver function had declined because she had cystic fibrosis related liver disease and cystic fibrosis related diabetes.
That was when doctors gave her the devastating news that she’d need a lung and liver transplant.
Her fingernails were blue from lack of oxygen and Lucinda could barely get from the couch to the kitchen without being out of breath.
“I was at end stage disease and 43kg and I needed to be 47kg to be able to survive the transplant,” she revealed.
“I was so malnourished.”
She downed three litres of strawberry milk a day to gain weight.
“The thought of it now makes me feel ill,” she laughed.
Because of the organs’ connection to the heart, it was easier for the surgeon to lift them all out like a car engine, replacing the healthy heart along with the damaged liver and lungs.
“The doctor made me feel like they did this sort of thing all the time, so I felt comfortable and wasn’t worried,” Lucinda shared.
“I’d spent a lot of time in and out of hospital with health issues, so it was no different to another time in hospital.”
Finding a suitable donor meant finding three organs from a donor with a similar body size and blood type.
Organ donation, she said, is very political in the hospital system and Lucinda was lucky the hospital board agreed to save her life, rather than give the organs to two separate people.
Removing her healthy heart meant Lucinda was in the rare position of being able to also save someone else’s life.
“It felt good. You have a certain level of survivor’s guilt when you have a transplant, so to be able to give back feels quite humbling,” she said.
During all of this she met and fell in love with her now husband, Damon.
“He was incredibly supportive and has been there through the worst of everything,” Lucinda said.
Planning their wedding in the midst of waiting for the transplant also provided a wonderful distraction for Lucinda.
“I hadn’t thought about dying because I was planning this wonderful life,” she smiled.
“The team had told my parents I would be lucky to make six months, but they didn’t share that with me because they didn’t want me to lose hope.”
It was a 12 week wait from the time she was listed to when a donor was found and she was rushed into surgery.
“I was very fortunate. A lot of people die waiting,” Lucinda revealed.
Three weeks after having the surgery she returned home and sixteen weeks later, she walked down the aisle in 2005.
Then her thoughts again returned to her dream of having a family.
“We’d talked to the medical team about having children. I’d had Damon tested to see if he was a carrier of cystic fibrosis long before we got married,” she said.
“I didn’t want to disappoint him if we couldn’t.
“I wanted to make five years post-transplant first, which would mean I had a chance of living a normal life expectancy.
“Around 2011 we began asking if we could have a family.”
Becoming pregnant and carrying a baby put Lucinda’s life at risk.
“I had to change of all of my medications to be pregnancy safe,” she said.
After a seven-year journey to fall pregnant, it was during a routine visit to her endocrinologist and complaining about feeling exhausted that a blood test revealed Lucinda was pregnant.
“I was elated. We both burst into tears,” she said.
Life then became a hectic schedule of hospital appointments to monitor her extremely high-risk pregnancy.
“It was full on,” she said juggling between three hospitals.
The growing baby put pressure on the transplanted organs, and led to permanently high blood pressure, putting her at risk of pre-eclampsia and placenta insufficiency, so baby Angus wasn’t getting enough food.
At just 28 weeks Angus was born by caesarean.
“I wasn’t prepared for 28 weeks. I had my baby shower planned for the Saturday and he came out on the Wednesday,” she said.
“He came out feet first and they held him up like a fish. He didn’t make a sound and then I heard a noise and thought, “thank God”.
But it was eleven days before Lucinda finally got to hold her baby and for three months, she and Damon lived in Ronald McDonald House while Angus remained in NICU.
Now, at seven-years-old, Angus is believed to be the only baby to be born to a mother who has had a triple transplant of heart, lung and liver and Lucinda remains one of the few living heart donors.
