Frothy urine and kidney disease diagnosis
"I was diagnosed with nephrotic syndrome in summer 2023. I am a teacher and coming up to the six-week holiday I had been feeling tired and nauseous. I also had a pain in my left side, and when I went to the loo I couldn't go properly, and my wee was foamy and frothy. I felt like I was going to explode out of my body, and I eventually went to the GP who told me I had a kidney infection and gave me some antibiotics.
"A few days later, I saw my mum at a party, and she asked what had happened to my legs as they looked massive. In fact, at the party a child put a temporary tattoo on my ankle and the next day it stretched apart because my leg had swollen so much! I didn't realise it, but it was all fluid retention. It went to my bum, legs, then my face and my eyes. I couldn't wear shoes at one point because my feet had swollen so much.
"The next morning, I felt awful and rang 111. They told me to get to A&E within the hour. The doctor I saw thought I might have nephrotic syndrome. I'd never heard of it. Two days later a nephrologist at my local hospital confirmed the diagnosis and told me I had to have kidney biopsy.
"I had a holiday booked and I remember thinking that whatever the problem was, it would be a quick fix. When I had the biopsy and my consultant explained there was no chance of me going on holiday, it all hit me. She was so nice about it but that was hard. There was this shock of suddenly being a part of a new world of kidney disease that I didn't want. I just remember crying.
"It took me a few weeks to recover from the biopsy because I had an internal bleed and an infection, and it was then about four months for the results to come through. I was given steroids to stop my kidneys from leaking protein which helped, but I had a huge relapse in October after reducing the dosage. I was incredibly poorly – I could barely walk, I was full of fluid, I couldn't see properly. Kidney disease was affecting all parts of my body. It's quite amazing how much the kidneys do.
"It was Halloween when I went back into hospital after my relapse. Then I saw fireworks outside my window on Bonfire Night, and then the hospital coffee shop started serving Christmas drinks. It was like all the seasons were going by, but I was stood still.
"In December 2023 I was discharged and officially diagnosed with nephrotic syndrome and focal and segmental glomerulosclerosis (FSGS). I take medication for the FSGS and I'm now in remission, though I have had a few admissions to hospital with various issues."
Counselling and mental health
"My nephrologist recommended the Kidney Care UK counselling service and the Kidney Kitchen. Kidney disease is isolating, and it felt like there was no one else for me to talk to, no one else in the same situation. During my first call with my counsellor, I asked, 'Am I just supposed to talk about my kidneys?' She told me we would talk about me as a whole person, that my kidneys were a small part of what made me, me.
"I talked about work, family, friends. I was taught ways to manage when I feel things are escalating. I felt able to say things that I thought I might be judged about. We looked at what in my life was draining and what was energising and started to prioritise the things that energised me. All the reassurance was amazing. Kidney Care UK has been a lifeline for advice."
Looking forward and advice for others
"Living with kidney disease is weird. At my age, I had friends buying first homes, or having kids, but my life was on hold. That was really hard.
"The biggest changes have been the physical changes to my appearance. I feel unrecognisable and invisible at times. Living with a chronic illness changes how you see yourself and relate to others. My mum got married in Barbados in March 2024. I was able to go with help from my nephrologist team, which was amazing, but I had 'moon face' from steroids and I was upset about how I looked on the day. People say you shouldn't let your appearance affect you, but it does."
"But kidney disease has also given me the drive to live my best life, and to take some (calculated!) risks that I wouldn't have done before like going for, and getting, a promotion at work. There is life after a kidney disease diagnosis. It's not a smooth road, but there is a road. For me it's about setting little short-term goals to restore some control.
"My advice for anyone living with CKD is to find emotional support and be kind to yourself. Treat yourself how you would treat your best friend. I've seen the kindness and care in people, like my amazing team and nephrologist at ward 15 at the Bradford Royal Infirmary."