Kidney society chair Chantelle Good on what’s it like to live with kidney disease

Chantelle Good carries a gene that predisposes her to life-threatening kidney disease. Here, she tells Paulette Crowley what it’s like to live with a condition that could shorten her life but has helped her live her best life.

I was 15 when I was first told my kidneys would probably fail. It turned out I was carrying the gene for the same kidney condition as my dad. His kidneys failed when he was 39 and he had to have dialysis from then on.

With familial focal segmental glomerulosclerosis (FFSGS), your kidneys don’t repair themselves as they should. Normally, when people get sick from something like a cold or flu, their kidneys will scar but then repair themselves. My body doesn’t repair the kidney scars, so they keep scarring and get to the point where they’re so scarred they stop working.

Not everyone with FFSGS will have the gene for kidney failure but I was already showing signs of it as a teen. I had high protein in my urine, and I would randomly get lethargic without knowing why.

They told me that if I was going to have kids, I should have them early as pregnancy can take a big toll on the kidneys. So I became a mum to my son when I was 21.

I was about 24 when I got really skinny and started throwing up in the mornings. Even then, I didn’t think that much of it, I just carried on with life. But I got sicker and sicker. A blood test showed my kidneys were failing. A couple of days later, I was in hospital to start prepping for dialysis.

The function of the kidneys is to help make red blood cells, get rid of toxins and pass fluid through to the bladder. When my kidneys failed it didn’t take long for me to stop peeing. You have to get rid of the fluid you drink and all the toxins that build up in your blood. The only way to get rid of it all is dialysis.

I started peritoneal dialysis, which you can do at home. They put a tube (catheter) into your peritoneum – the lining of your abdomen - that delivers a special fluid that cleans your blood via gravity feed. The fluid stays in you for a few hours and then it’s released with all the toxins. The entire process takes about 30 minutes, and you have to do it about four times a day. I’d do one at 7am, one at lunchtime and another one around 4pm. Then I’d do another one right before bed. I eventually got a machine that could work while I was sleeping – it did the four dialysis cycles from 9pm to 7am.

I had this type of dialysis for about two years. While I was dialysing I looked pretty much like I was at 25 weeks pregnant. I’m quite little, so when you put 2-3 litres of fluid into my tummy, it’s like having a little baby in there.