Holly's Story
"Never in my wildest dreams would I have guessed I was dying"
How did you learn you had kidney disease?
I learned I had kidney disease when I was about 3 months old. My nappies were dark urine colour, and I soon had a biopsy at the Royal Children’s Hospital in Melbourne confirming I had ’thin base membrane disease’. I was managed for that with regular visits to hospital throughout primary and high school. I got to around 23 years old and after a routine blood test and biopsy confirming my kidneys were failing quicker than expected. I went to Bali in 2016, came home with an extreme case of Bali Belly, another routine blood test confirmed it had put my Kidneys into complete failure going from stage 2 kidney failure to end stage at 14% complete function. I went into ICU straight away having a failed Biopsy cutting through my main artery sending me into a complete spiral of a life change within 24 hours.
Did you have any symptoms?
I wasn’t symptomatic at all, whatsoever. The only symptoms I ever got were when my kidneys were at 14% function, and I just felt extremely tired. It was crazy, insanely scary how sick I was, I was dying, and I didn’t even know. We just push through during those times thinking we’ve worked out too much, stayed up too late or are under too much stress. Never in my wildest dreams would I have guessed I was dying.
What age were you?
When I found out my kidneys were at complete failure, I was around 23-24 years old. Right in my prime of life! I lost that era of my 20’s to near death and fighting for my life.
What did you have to change about your life following the diagnosis?
Everything. When my family got told when I was born, I wasn’t symptomatic or had to change anything. When I was 23, I had to reduce salt. When my Kidneys completely failed, I was on a 500ml fluid restriction PER DAY! One cup of coffee is approx. 250mls. Imagine having a max of 500ml per day! If I went over (which I did a lot as I had to learn the hard way how much fluid was in certain foods) I would literally gasp for breath and almost drown in my own fluid building up in my lungs. I would feel the fluid coming up my throat as I’d gasp for air waiting to be rushed to ICU again. It was living torture. That amongst other things, it was honestly a living hell, and I can’t believe I’m still mentally stable today to even be here to tell the story.
How long did the process of your father donating to you take?
It took about a year. The testing took about 9 months, but it was over a Christmas period, so approx. about 10-12 months it took. What a saviour. It was super thorough, careful, and intense.
What's the recovery been like?
Recovery was so tough. I assumed when I got the Kidney life would get better. But like most good things, they tend to get worse before they get better. I really struggled with the anti-rejection meds I was on. I’m quite petite, so I was really sick from those, so I was hospitalised quite a few times for weeks on end post-surgery. That plus getting my electrolyte and mineral levels right which was affecting other parts of my body, it was a long, tough mental and physical slog. I'm quite lucky and the kidney took immediately! I went from not being able to pee for 12 months, to peeing straight away. The simple things! The pain was unreal recovering. Breathing hurt, talking hurt, everything just hurt. It was about 4 months until the pain and swelling went away!
What do you want people to know about kidney disease?
Honestly, that it exists. It happens to more people than you know, in your close circle one of your friends probably has it and doesn’t even know. Its silent, you won’t know it's there, you won’t have a symptom in sight. Just know that. Get a blood test, get out of your own way and put your ego and fear aside, you AREN’T invincible and get a blood test. I was hitting PB’s at gym in weights the week I was running on 14% kidney function. Dialysis is more or less life support, and I would never ever wish that experience and true suffering upon anyone. It was one of the biggest traumas in my life I am still working through and getting past to this day, and it's been 6-7 years since. ICU, living in hospital for 3 months at a time, it's not the life you want after living the way you do now gets taken away from you. Your choices, your dignity, your values, your life - it gets taken away and managed by the hospitals. Be better and get tested.