Nicki Scholes-Robertson is an inspiration … Diagnosed with chronic renal disease in 2009, she was the fortunate recipient of a kidney transplant in 2014.
A passionate advocate and speaker about living with chronic kidney disease and the need for further research, Nicki shares her story with FOCUS readers …
Hi Nicki. What’s your association with the New England area?
My husband, Neil, and I decided to move here in 2005, so that our three children, then aged five, seven and 10, could have access to all the wonderful education options available in Armidale.
We had been living in the Pilbara region of WA before this. My dad had grown up here and attended Armidale High School, before moving away to join the Army; he had always talked about how much he loved it, so we came … and, well, we have stayed.
When were you diagnosed with IgA Nephropathy (Berger’s Disease) – and what can you tell us about this condition and its causes?
I suddenly became quite sick late in 2009 following a sore throat, and after a few days of feeling unwell, saw my GP. After some blood tests showed that my kidney function was very compromised, I was sent to see Dr Steven May in Tamworth. They then performed a kidney biopsy, and I was diagnosed with IgA Nephropathy and acute Streptococcal Nephropathy.
IgA is an autoimmune disease that results in inflammation that over time can cause the kidneys to have severe damage. Cause is unknown at this stage.
Please share with us your journey to date with chronic renal disease …
I was sick quite quickly at the start, but the main symptoms where breathlessness and fatigue. Also, for much of my time prior to starting dialysis, I had a very strong metallic taste in my mouth.
I started preparation for dialysis in December 2013 and then commenced peritoneal dialysis in the March of 2014. I felt so much better when I started dialysis, and I was lucky enough to get a kidney transplant at the end of 2014.
It has been difficult to work full-time since I got sick, but I am still able to work part-time, and this allows time for appointments and staying well.
You were the fortunate recipient of a kidney transplant several years ago now. How did this come about, and where/when did the operation take place?
Just after I started dialysis and was eligible to go on the transplant list, my little brother, Drew, approached me and was very keen to give me one of his kidneys if that was possible. After a lot of testing with both of us on November 18th 2014 at RPA, I received one of his kidneys – which we have nicknamed “hand me down”.
He was in hospital for three days and is doing very well with his one remaining kidney. I was in hospital for six days, but stayed in Sydney for a further nine weeks to attend all the follow up appointments.
It’s important to note that there’s no cure for chronic kidney disease – only management and treatment – but how has life been for you since the operation?
There is no cure at the moment. Life for me has been pretty amazing, though there are quite a few side effects from my immunosuppression medications, but they are worth it to feel as well as I get to be. The main side effect that I get are skin cancers, so I require regular skin checks and have to be very careful not to be out in the sun too much and definitely to be sun smart when I am.
It’s rather an alarming statistic, but it’s believed as many as one in ten people in Australia has some form of chronic kidney disease (or indicators of disease). What do you feel we can all do as a community, whether at individual, corporate or government level, to raise awareness of this issue?
It is alarming the predictions of how many people have kidney disease. The key is prevention where possible. The main causes of kidney disease are diabetes and high blood pressure. It’s important that people work closely with their medical teams to stay well. We also need to educate people about it as much as possible. At a government level we definitely need to be advocating for funding for prevention and education.
What are your thoughts around organ donation?
I am passionate about organ donation. It saves lives. For me and others affected by kidney failure, transplantation gives us and our families a better quality of life and means we can work and participate in things we love more freely.
Families who make the hard decision to donate their loved one’s organs are the true superheroes of our world. In Australia at any time there are about 1,400 people on the organ transplant waiting list.
You’re a passionate speaker at events involving chronic kidney disease. What are some of the events/projects you’ve been involved with in recent times … and what’s on the agenda event-wise for 2019?
2018 was an amazing year for me. We started the Norm Bourke Box for home dialysis patients with the help of the Tamworth Renal outreach team, and it has been great.
I was asked to speak as a patient at the Australian and New Zealand Society of Nephrology annual scientific conference on patient involvement in research, which was a great experience. Also, as a result of that conference, five of my renal buddies and I made a film with the help of Sarah Watson (little Fish) to promote patient involvement in research, #patientsincluded. This has been entered in a film contest at the World conference of Nephrology in Melbourne in April, where I have also been asked to speak at a Global Health forum regarding kidney care.
Further info …
Kidney Health Australia – kidney.org.au website has lots of information about all sorts of kidney related issues.
Donate Life – donatelife.gov.au – information re organ donation and registering to be an organ donor.
Interview: Jo Robinson.