Four transplants, eight kidneys: Meet the father and daughter with an unusual bond
Posted August 04, 2019 05:00:00
Lorelei and Peter Murko share an unusual bond. Together, they have eight kidneys.
“At first I thought nothing of it,” said 10-year-old Lorelei, slumped on the couch after a day at school.
“But [having Dad go through the same thing] helped a lot, because now I know what’s going to happen if something goes wrong.”
The father and daughter from Bowral in New South Wales have focal segmental glomerulosclerosis (FSGS) — a disease that causes scar tissue to build up in the kidneys’ filters.
It can lead to permanent kidney damage and even failure.
For the Murkos, the first ‘failure’ occurred in 1983 when Peter was just five and the first donor was his mother.
First kidney transplant
Peter had developed oedema, which occurs when fluid builds up in the body.
“I remember being very sick and being on dialysis, but I didn’t really understand or comprehend what was actually happening,” he said.
After extensive testing, it was decided that Peter’s mother Vida would donate her kidney.
“I knew there was going to be a big operation,” he said.
“I knew that Mum was donating a kidney and that was a special thing, but the gravity wasn’t there for me. It was just, ‘Oh, this is what’s going to make me better’.”
According to Kidney Health Australia a live, donated kidney is the preferred treatment option.
Live kidney donations make up about three of every 10 kidney transplants in Australia each year, and they generally last longer as there is often a better genetic match.
And while it did make Peter better for a while, it was not a cure.
“A lot of people think that transplantation is a cure. It’s not. It’s a treatment, and I often say, ‘This is where the fight really begins’,” he said.
Transplant survival numbers have dramatically increased since Peter had his first transplant.
According to data from the Australia and New Zealand Dialysis and Transplant Registry, the five-year transplant survival rate has improved from 47 per cent in 1980 to 85 per cent in 2010 for all ages in Australia.
Second kidney transplant
Twenty years later, the first donated kidney failed for Mr Murko.
“It was like losing a family member. It broke my heart,” he said.
The migraines and general poor health were familiar.
He knew what was coming, but his life was now different.
He was newly married to wife Jenny, and his donor — his father Frank — was an older man.
“Knowledge is one of those things where it can be a good and a bad thing,” Mr Murko said.
“I knew what was going to happen, but at the same time you’re going, ‘This is happening for real, I’ve got a wife at home, she’s going to be by herself for two months and we only just got married’.”
Despite his concerns, his second transplant was successful and for 13 years he lived a relatively normal life.
He went to work and his family of two turned into a family of four.
And then one day, everything was far from ordinary.
Third kidney transplant
In 2016, Mr Murko’s heart broke again when the kidney donated by his father began to fail.
He was put on overnight peritoneal dialysis where he would hook himself up to a machine to filter his blood.
While life continued, Mr Murko’s health deteriorated and the ‘what next’ conversations began.
This time, Jenny volunteered her kidney.
Unfortunately, testing revealed Jenny was not a match, so the couple joined the Australian Paired Kidney Exchange.
Under the program, a recipient with a donor who is not compatible, like Jenny, is matched with another donor-recipient pair in the same situation.
Donor kidneys are then exchanged.
While coming to terms with the logistics of the exchange, the Murko family was sideswiped.
Lorelei, a seemingly healthy eight-year-old, was retaining fluid.
She was lethargic, headachy, her eyes were puffy, and in 2018 was also diagnosed with FSGS.
Like her father, Lorelei suffered a complete kidney failure.
“I took it particularly hard, I blamed myself,” Mr Murko said.
“And when we found out it was a genetic mutation I passed down to her, it was pretty tough to take.”
For Lorelei it was also a nerve-racking experience.
“I had to wear different shoes at school because my school ones wouldn’t fit because my feet were really puffy,” the now 10-year-old said.
“I wasn’t able to run. I had to sit out of games. [It was] kind of sad,” she added.
When the family found out about Lorelei, Mr Murko urged Jenny to give her kidney directly to their daughter.
He wanted to call off the exchange.
The desire to put their daughter first was extreme, but after consulting with both of their doctors the decision was made for Jenny’s ‘exchange’ kidney to go to Peter and Lorelei to stay on a waiting list.
“She gets first pick because she’s a child, and she goes to the top of the list,” Mr Murko said.
“It was what the doctors advised.”
With this news, Lorelei was added to the deceased donor list, with Peter waiting for the kidney exchange to be activated.
“We all assumed that Lorelei would be the first one called up because she’s young and they always give priority. But, in fact, it was Jenny and I,” Mr Murko said.
In May 2018 the exchange was activated, and in August Jenny altruistically donated — via the Australian Paired Kidney Exchange — to Peter.
“This one hit me the most and meant the most,” he said.
“Your parents are people that will just do it, but when your wife does it, or your spouse does it, that really took me time to put into perspective.”
Despite the stress, the process was not without laughs.
“I still had my original kidneys there — they’re the size of a walnut, but they are still there — so that means, yeah, I’ve had five kidneys,” he laughed.
With the surgery a success, Peter spent two months recovering at The Royal Prince Alfred Hospital in Sydney.
Then Lorelei got the call.
Fourth kidney transplant
Within the hundreds of school days Lorelei had attended, there was one that stood out.
“I just remember it was about 11 o’clock at school and I was about to eat my lunch and all of sudden my teacher came running in saying, ‘You’ve got the call, you’ve got the call’,” Lorelei said.
“Mum and Dad picked me up and I had to get everything ready, and then I went to get my surgery.
“All I remember is that I woke up with lots of tubes and I was in heaps of pain.”
Like her father and other kidney recipients, Lorelei stayed close to the hospital for almost two months to have her blood tested daily.
Now, 10 months on, she is almost back to full capacity.
“It’s much better because me and my friends like to run around a lot and be crazy,” she said.
“There are still a couple of sports I can’t do that involve contact with the body, but hopefully when I heal enough I’ll be able to do contact.”
Looking across the room, Peter smiles at his daughter and describes their rare bond.
“I look at [our relationship] as something that’s very special and I hope that when she’s 20 [or] 30 years old, and god-forbid if she has to have another transplant, that she’s well prepared and she’s got the right mindset for it,” he said.
DonateLife Week 2019 is Sunday July 28 to Sunday August 4. All Australians can join the Australian Organ Donor Register here.