- Anita Demchenko, 46, Pimpama, Qld fell ill with whooping cough
- Her health declined so badly she needed a lung transplant
- Now the busy mum is grateful for a second chance at life thanks to a stranger
Here Anita tells her story in her own words…
Putting pen to paper, tears streamed down my face.
I want you to know I’m always so proud of you, love always, Mum… I penned, adding the letter to the stack next to me.
It was January 2018, and I’d spent the last two hours writing letters to my children Mercedez, then 15, Alyssa, 11, Joshua, three, and Aaliyah, one.
There was one for every birthday, school graduation, wedding day and milestone I’d miss after being given just six to 12 months to live.
I’d written notes to my husband Kallam, then 30, too.
My health had declined rapidly after a bout of adult whooping cough seven years earlier.
I fought it off, but by 2012, I was getting ill with cold and flu symptoms that lasted for months. Worried, I went to see my GP.
‘I have a lingering cough and fatigue,’ I told her.
I was referred to a lung specialist but, after countless tests, they couldn’t uncover the cause of my illness.
Frustrated, I’d stay up googling my symptoms, desperate for answers. But it was no help.
By 2015 my health was so bad, I became severely depressed.
I had an almost constant cough
My cough was so persistent it was hard to breathe, and I’d choke and almost vomit.
I struggled to sleep and was irritable.
I had an almost constant cough, even when I fell pregnant with Aaliyah in December 2016.
Doctors were concerned about how my illness might impact Aaliyah. But thankfully she was okay.
I was prescribed codeine to suppress my coughing, but it took a physical and mental toll.
Kallam bought me a walking frame, then a wheelchair when the exhaustion was too much.
I worked in finance, but was losing my breath just walking to the photocopier so I had to quit.
I can’t keep living like this. The family would be better off without me, I thought in my darkest moments.
In August 2017, just weeks after Aaliyah was born, we moved from Cairns to Brisbane to be closer to specialists.
Seeing a new lung specialist in September, he was concerned about how long I’d been suffering for.
By now, I’d had a cough for seven years.
I was losing my breath just walking to the photocopier so I had to quit my job
He booked me in for a chest X-ray, CAT scan, and an echocardiogram.
He also had me do a six-minute walking test and I was placed in a breathing chamber.
In January 2018 a lung biopsy confirmed my diagnosis.
‘You have idiopathic pulmonary fibrosis (IPF) and chronic hypersensitivity pneumonitis,’ he told me, explaining both diseases caused terrible scarring on the lung tissue, causing my breathing issues and the persistent cough.
I wept tears of relief, grateful to have answers.
But there was worse news to come.
‘Given how quickly your health has declined, you likely only have six to 12 months left to live.’
At that my heart broke in two. I was only 40.
How was I going to tell the kids?
I couldn’t imagine not being around to see them grow up.
‘I’ll be by your side every step. We’ll fight this,’ Kallam said.
‘We suggest you start chemotherapy to slow the progression,’ the doctor suggested.
I’ll do anything to be here for my family, I vowed.
We decided not to tell the kids straight away. I was determined to fight.
The next month I started chemotherapy to buy some time. But by March, tests showed it wasn’t helping.
‘You need a double lung transplant,’ doctors told me.
I underwent countless tests to be added to the donor list, and in June I was finally listed.
It was then we broke the news to the kids.
‘We believe in you Mum,’ the big kids all told me.
But there was no telling if the life-saving donation would come through in time to save my life.
Then one morning the phone call came from the hospital.
‘We have a potential donor for you,’ they said.
We sent the kids off to school and daycare, and before they went I gave them all a cuddle and a kiss.
Then we raced to the hospital.
This could be my second chance, I thought, hopeful.
As I was wheeled into surgery, I prayed I’d get to see my little ones again on the other side.
When I woke in the ICU seven hours later, Kallam was smiling at me.
After a few days’ recovery, the kids came to visit. It was amazing to see them again.
It wasn’t until later that the gravity of what I’d been through hit me.
While I’d been at home with my kids, someone
out there had lost a loved one.
My heart broke for their family. I won’t waste this precious gift, I vowed.
For the last seven years, I’ve stayed true to that promise.
Now, I can breathe more easily, move more freely, and enjoy everyday moments again – walks with Kallam, 37, or playing with the kids, Mercedez, now 23, Alyssa, 18, Joshua, 10, and Aaliyah, eight.
I’ll be on anti-rejection medication for the rest of my life, but so far, I haven’t had any issues.
In March this year I launched Donate Buddies – a heartfelt social media initiative to help explain organ and tissue donation to children who need a transplant, or to support parents in talking about it with their kids.
I’m also an advocate for DonateLife, encouraging people to register for organ donation.
If my story encourages even one person to register or have the conversation with their loved ones, I know I’ve done my job.
Thanks to my donor, my kids never had to read the goodbye letters that I wrote to them.
Instead, we’re busy making memories together every day.
Visit donatelife.gov.au to register today.
If you are struggling and need support call Lifeline for free 24/7 on 13 11 14 (AUS) OR 0800 543 354 (NZ).
