I was diagnosed with ADPCKD at the young age of 13.
Fast forward 18yrs and my life was turned upside down! I had just moved to Young NSW and settled into my new Job when my left kidney haemorrhaged; I was transferred to Canberra Hospital where I remained for 6wks. My left kidney was removed on the 30th June 2017.
Awareness of Polycystic Kidney Disease is about to receive a major boost from a team of dedicated rally car drivers and a family determined to make a difference.
Team HoBro and car “Polly” is embarking on the Kidney Kar Rally from Port Macquarie to Armidale via the Capricorn Coast (9-17 August) and are among the top fundraisers supporting children with kidney disease. They have named their car “Polly” to raise awareness of the impact of Polycystic Kidney Disease (PKD). PKD affects Jason’s wife, Fiona and many members of their immediate family.
I found out at age 27, purely by being tested for something else, that I had PKD. I later found out that my brother also has it. We assume our mother had it as her death certificate was kidney failure. I lived a relatively normal life until around 2015 when my kidneys started to fail and I started haemodialysis. I did home haemo which gave me much more freedom than having to go to the hospital to do it. I got “the call” at quarter past twelve on Friday morning of 23 March 2017 that a kidney had been found for me.
My mum died when I was seven. She had Autusomal Dominant Polcystic Kidney Disease. I remember her being so unwell on haemodailysis at home. It was traumatic for me; as a young child it was hard to see my mum in so much pain and there was a lot of blood. It was the 70s, a lot has changed in the treatment of this diseases since then.
I didn’t understand much about the disease at the time, but I do recall my dad showing me pictures from a medical journal and trying to explain it to me. I remember a picture of a kidney full of cysts and although at the time I didn’t know what the kidney did, I knew the one in the picture just wasn’t right.
I was diagnosed with PKD when I was 19. I’d had a UTI and some pain in my kidney area, particularly when I started going out dancing as a young adult. Learning that I would follow a similar path as my mum was near to devastating. My kidneys failed when I was 37. I was very unwell in the lead up to this. I went on haemodailysis for 4.5 years and continued to work four days a week. My partner became my carer and my career was put on hold.
“we wanted to share a story from one of our community members that addresses the issue of pain and demonstrates the complexities of the disease. It prompted us to get in touch with our scientific advisory board for advice on dealing with pain from PKD”
My eGFR kidney function number is currently at 27, so by renal clinics there is nothing to do here. Move along. The slight catch with this “one number check” is that it applies to the majority of renal failures. In these cases as the kidney fails it can shrink in size.
The condition I have is called polycystic kidney disease or PKD. This has a different result as the cysts grow the kidney gets larger as the kidney fails. So as described above, where the general 150g functional kidney gets smaller, the eGFR is a good gauge. With my PKD I have had one kidney removed and my original 150g kidney is now 3000g. Yes 3kg! So as any rational thinking person can see the eGFR no long becomes the only significant measure in the comfort to the patient.
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Like her grandmother, father, brother and son, Anna has autosomal dominant polycystic kidney disease (ADPKD). “Knowing that you are likely to end up with kidney failure…is like having a ticking time bomb,” she says.
The threat has done little to slow down the pace of her international career or life with her three children. A senior human resources manager with a leading management consultancy, Anna, now in her early 40s, has an overseas role as well as leading the company’s human resources services in Australia.
The family’s history suggests that Anna, too, may eventually need dialysis or transplantation. “I try not to be overwhelmed by that, because you could let it become all-consuming,” she says. “Sometimes when I look at the future I pull back and realise that there’s so much more in life. This is just one element that I have to live with.”
As a child Anna visited her grandmother who was having dialysis at home. She became one of Australia’s longeststanding dialysis patients, being treated for more than 20 years. For a child, exposure to an unwell older relative was disturbing. “The machine was like another person in the house,” she says. “It was confronting to learn that her blood would leave her body, get cleaned and get put back in again.”
A dozen years ago, Judi and I were two mums who shared a school run for our boys. Our biggest worry then, was when to give up the drive and allow our two fifth graders Michael and Sam to take the train.
At their first sleepover, we shared that each of our sons had polycystic kidney disease, known as PKD. Michael has ARPKD, which affects one in 20,000 births. Because it’s a recessive disorder there was no sign of it in earlier generations. ARPKD children like Michael, need continuous treatment from birth and before long Judi will be his kidney donor. My Sam, like his 3 siblings has ADPKD. He had a 50% chance of inheriting the gene from his father Michael senior, who was then aged 53 and starting dialysis.
Back then, when our kids were young and still at school, we hoped for some kind of miracle to hold back the future choice of dialysis or transplantation; two mums’ ferocious love compressed into a wordless background hum of constant worry. We imagined raising money for research. Supporting some already established group.
I discovered that I had PKD back in 1989 after a four-wheel driving adventure on Fraser Island. The rough terrain managed to give me the warning sign. After a visit to my GP on returning home and a scan, he announced that I had PKD and referred me to the Renal Centre at my large, local hospital. After more checks and visits I was advised that it was likely that I would be on dialysis within 5 years (that would be at age 50). I was referred to the hospital dietitian and received lots of other literature. I was a bit shocked by all this at the time in my life. Could not find any family PKD connections. Anyhow from then on, I visited my hospital kidney specialist regularly, followed all the dietary advice, took up regular personal regular monitoring of my BP and decided that I was going to get on with life to the full but within my constraints. I needed to reduce weight, salt and sugar, exercise more…that was the hard one, eat all the right foods that relate to potassium and phosphorus intake, etc etc.
My wife and I loved to travel, not only in Australia but also overseas. Realising that fairly soon we may be restricted by my PKD we hit the road so to speak, caravanning, camping and a number of overseas trips, all under the guidance of my renal specialist.
When my son was born, there were already tiny cysts growing in his newborn kidneys. I knew there would be a 50 percent chance that I would pass on ADPKD to my son, but as I lived a symptomless childhood I did not expect that we would run in to problems so soon.
As a first-time mother I was struggling with feeding issues and my son struggled to gain weight. After several trips back to the hospital I had this awful feeling that something wasn’t quite right. I had noticed rust-like stains in his nappies, which was brushed off by the doctors and nurses.
Eventually he was re-admitted to hospital with a UTI where they failed to get blood after several attempts to take blood from his tiny veins. I had to hold him in a scrunched-up ball as he screamed and the doctors proceeded to perform a lumbar puncture. They wanted to be sure his recently diagnosed UTI had not spread. The antibiotics cleared the infection and after a few days we were released to go home. When the antibiotic course had finished it all happened again, rusty nappies, and an immediate urine test confirmed another UTI. I was a nervous wreck.
My name is Janice Creenaune and I have PKD. My mother has PKD. Her sisters had PKD and my daughter has PKD. In my family, through the generations, it was always known as the ‘Women’s disease’. Most, living in the country areas, had limited care. Records are limited. However, I knew of nobody outside of my immediate family who suffered from the disease.
All of you suffering from PKD have a story associated with your illness and many of you have far more complicated conditions. Yet we have much to learn from each other.
