My Activity Tracking
140
kms
My target 120 kms
My Red Socks Challenge for Kidney Health
People on dialysis spend around 60 hours every month connected to a machine.
This October, I have committed to the Red Socks Challenge, to stand with Australians living with kidney disease, myself included.
I will be walking 120km in October - raising awareness and helping fund better care for those with a kidney condition and on dialysis.
Please donate to support a better future for people with kidney disease. We thank you for it! ❤️
My Achievements
Made a self donation
First donation received
Halfway to fundraising target
Hit fundraising target
Shared on social media
Created a team
Half way to KMs
Reached KMs Goal
Logged first fitness activity
Created a Blog Post
Fundraising Milestone Reward #1
Fundraising Milestone Reward #2
Fundraising Milestone Reward #3
Fundraising Milestone Reward #4
Fundraising Milestone Reward #5
My Updates
My experience - IgA Nephropathy
Saturday 10th Oct
It began on an ordinary night. It was January of 2013. I was on my computer, playing a game and/or listening to music and likely messaging a friend or two. I started to get very itchy on my legs. I thought it was just harmless itchiness. It kept going. And going. And going. Getting more intense. I look down. There were red dots appearing on my legs. I thought perhaps I was bitten by a bug, and tried to ignore it. No, the marks were spreading rapidly. I was starting to get pain in my abdomen and was getting very hot. I started to freak out. It may have been past 10pm. I notified my mum.
I didn't know what was happening. The pain was getting more and more intense. There was a golf ball sized lump in the tender spot at the bottom of my foot, it was so agonising. I couldn't stand, and struggled to move. I remember being doubled over on my bed, screaming in pain. It happened so quickly. I had never felt pain that bad in my life, it was indescribable. My abdominal pain felt beyond the worst cramp imaginable - it wasn't a cramp. It was my organs. My kidneys were inflamed and bleeding. The pain was excruciating. My legs felt like there were tacks being pressed into my skin - both searing pain and pressure. The golf ball lump pulsing in pain. My capillaries were inflamed. At some point when I went to the toilet, my urine was black.
I went to the emergency department. I was diagnosed with IgA vasculitis at that point. Shortly after - IgA nephropathy.
That was the start of my 2013, a month before turning 19. To be diagnosed with an incurable autoimmune disease that attacks the kidneys. Whenever I get sick, my body produces faulty IgA proteins. The buildup of these proteins in the kidneys causes them to get inflamed and scar, and reduces the kidneys' ability to filter waste from the blood, which will eventually lead to kidney failure and a need for dialysis / a transplant or else, death. And even if you're lucky enough to get a healthy transplanted kidney or two, and the procedure is successful with a lifetime's reliance on medication, the cycle repeats.
My outlook on life changed again. I was already struggling with my mental health, and this was just another blow to a life of struggle. I've had flares of IgA nephropathy since then, being hospitalised several times. In the years following those episodes, my hands get affected, even when I feel "normal". I tried as best as I could to live a normal life, to feel accepted in society by drinking alcohol with friends, family and acquaintances, which no doubt was and is not good for my kidneys. I always knew that but couldn't help but feel embarrassed, judged, or left out if I didn't.
Fast-forward to now, I still struggle with having this condition and several other health issues that feed into it (i.e. respiratory issues, anaemia). It is the biggest reason why I am afraid to have a child, or go back to study, thinking my life can be over at any moment. Knowing that this condition can strike my health suddenly, without warning. I am currently sitting at Stage 2 chronic kidney disease. My whole life, I have had blood in my urine (haematuria), even as a baby.
This year when I asked to be referred to a nephrologist through my GP, my referral was rejected, because my kidneys' EGFR is over 60. It is currently 80. This response from the healthcare system in Perth is not good enough and makes me feel pushed aside and like I don't matter. Even doctors' attitudes are basically if you're not dying, you're fine. It's enough to make someone (e.g. me) give up. Why does the system wait, only to see people who are in rapid decline, over proactive, preventative care regardless of the stage of kidney disease? It saddens me that Australia does not have any medication available to manage the disease, as other countries do.
My view on life now is to try and enjoy life as much as I can. Experiences matter. Gratefulness matters. Being around people who add positively to your life matters. And most importantly, never take your health for granted - even the ability to do 'simple' tasks is a blessing.
I hope my fundraising as part of this initiative can help people understand kidney disease and conditions that impact the kidneys, like mine, and how to manage living with these conditions. The road ahead is unknown but I will continue to take it day by day. My positive days and not so positive days. At least I still have those days, and I am thankful for the days I am not in excruciating, debilitating pain.
Thanks for reading and your support.
Image: when I was first diagnosed with IgA vasculitis.
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