Jennifer Murko, 39, from Bowral, NSW, discovered her daughter and husband both needed life saving surgery. Here she tells her story in her own words.
Lying down on her father’s bed at home, our seven-year-old daughter, Lorelei, put a paper bag on her tummy.
She’d made a fake dialysis kit to keep her dad company, while he had his dialysis.
Peter, 41, had focal segmental glomerulosclerosis (FSGS) – a disease that causes scar tissue to build
up in the kidneys’ filters, causing them to fail.
When he was just five, his mum, Vida, had given him an organ and when he was 28, his dad, Frank, gave him another.
But now his donor kidneys were failing.
Back on the transplant list, Peter needed dialysis to filter the toxins from his blood, every four hours, into a bag.
We’d always been honest with Lorelei and her brother, Alexander, 10, about their dad’s condition.
‘Daddy needs a new kidney,’ I told the kids.
Then, a few months later, we noticed that Lorelei had puffy eyes.
Her stomach and legs look swollen too, I worried.
‘Let’s get her to the doctor,’ Peter said, suspecting a build-up of fluid, a common symptom of kidney disease.
When tests revealed Lorelei had FSGS too, Peter was racked with guilt.
‘What have I done to our daughter?’ he tortured himself. ‘She’ll have to struggle for the rest of her life.’
‘It’s not your fault,’ I told him.
We hadn’t known the condition could be inherited when we’d started a family.
When we broke the news to Lorelei, she was a trooper.
‘You have the same condition as Daddy,’ I said.
‘Okay,’ she replied. Peter and I hugged her as tears filled her eyes.
Within five months of her diagnosis, doctors said Lorelei was in complete renal failure and she was put on the transplant list as well.
While Lorelei could receive a kidney from a deceased donor, Peter needed a living donor because he had multiple antibodies in his system.
Sadly, I wasn’t a match, but doctors suggested a paired kidney exchange, where I’d donate a kidney to someone compatible with me, and Peter would receive a kidney from someone who was a match for him.
‘What if she doesn’t get a kidney?’ worried Alexander, scared for his little sister.
‘She’ll be okay,’ I told him.
Lorelei had a catheter implanted in her stomach through which dialysis fluid flowed in and out.
It had to stay dry and sterile so she couldn’t swim, or run around at lunchtime like the other kids.
It broke my heart to see her missing out on school, sports and sleepovers.
Both Peter and Lorelei were constantly tired, and we had to be so careful they didn’t catch infections they barely left the house.
They’d watch their favourite TV shows together, then every four hours they’d go to their rooms for 45 minutes of dialysis.
Lorelei’s favourite soft toy, a black and white cat called Puss Puss, always kept her company.
And if she needed anything while she was hooked up, her doting big brother would grab it for her, or play cards to help her pass the time.
Peter also taught Lorelei to keep her catheter clean and dress it properly.
‘Did you sleep well, Daddy?’ she’d ask him.
‘Yes, is your tummy okay?’ Peter would check with her, knowing the cramps could be painful.
As months passed, Lorelei sometimes wondered how much longer it was going to be, or what would happen if she didn’t get a kidney.
‘Dialysis is doing what your kidneys do, so we will keep doing that,’ I told her.
We never dwelt on the ‘what ifs’, instead we focused on staying positive.
In total, between them, Peter and Lorelei have had eight kidneys!
Then, 18 months after Peter was put back on dialysis, and six months after Lorelei’s diagnosis, Peter and I were able to have our op.
‘I feel so much better,’ Peter said, almost immediately after his transplant.
Just two months later, we got a call from the hospital. A deceased donor kidney had become available for Lorelei.
I was so grateful, but my heart broke for the family who had lost a loved one.
The surgery went well, and after two months in hospital, Lorelei came home.
It was amazing to have them both back.
They still have their original kidneys – Peter’s are so damaged they’re the size of a walnut.
In total, between them, Peter and Lorelei have had eight kidneys!
‘I’m really lucky,’ Peter grinned after a day of doing karate with the kids.
Life is much easier now – we can go swimming or to the beach.
Best of all, Lorelei and Peter both now have the energy to play.
We even celebrated her 10th birthday at the zoo, something we couldn’t have done before. Peter is now back at work and Lorelei has caught up in school.
‘We have to live our lives to the fullest,’ Peter says. ‘We can’t let the illness define or defeat us.’
They are both on lifelong medication to prevent the organs rejecting, and some days I worry about how long their new kidneys will last, but then I remind myself how lucky we are to still be a family. ●
To find out more about becoming a donor go to donatelife.gov.au or donor.co.nz
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