Haemodialysis and holidays
"I was born premature, and while the doctors think I’ve had kidney disease from birth I was officially diagnosed at 27. I was sick, losing weight, not keeping food down. At the time the doctors said it was the stress of being a single parent.
"Eventually, my mum took me to hospital and my creatinine was in four digits. They told us if she hadn't brought me in, I’d have died. The next day I had my first course of haemodialysis. When the doctor said I had end stage kidney disease, mum and I started crying. We didn’t know what dialysis was, I thought my life was over. My daughter was only six. Looking back on it, I think I was a miserable cow when I started dialysis!
"The medical team suggested home dialysis, but it wasn't for me. I found dialysis depressing enough, and I didn't want to be stuck at home with the machine! I did in-centre dialysis three times per week for six years until my transplant.
"When I was on dialysis, me and my daughter went on three holidays, to St. Ives, Spain, and Butlins, though she had to come to my dialysis sessions with me. It took me by surprise that I could go on holiday, so that was very good.
"I got the call for my kidney transplant on 9 January 2006, in the middle of the night. They told me I was a perfect match. I went to the hospital at 9am the next morning and didn't go to theatre until 10pm. That was a long day! When I came round after the operation, I was so full of fluid I couldn't fit into my clothes. Luckily the woman in the bed opposite had a spare pair of trousers that fit me! I'd been really craving a cheese and tomato sandwich and I couldn't wait to eat one."
The difficulties of living with kidney disease
"It's not easy, living with kidney disease. Unless you go through it you don't know. When I was on dialysis I had a Blue Badge, a Freedom pass, higher rate of disability, and that all came to an end after my transplant. I get the lower rate of Disability Living Allowance, but I'm not going to get better. Everyone thinks you’re normal again after a transplant. Because benefits and help are so strict, you have to be at death’s door to get support, it's so unfair.
"It's exhausting too. When I was on dialysis the first time, it felt like I was just existing, I couldn't eat this, or drink that. I was so tired; I would just come home and sleep. It drains you. Kidney disease isn't well known like cancer or heart disease but lots of people have it.
"It gets really frustrating when you fill in a medical form and kidney disease isn't mentioned. The number of arguments I've had going for a medical for benefits, when they’ve said there is nothing wrong with me. You have to prove you are not well. It's stressful and shocking."
Failing transplants and looking to the future
"It hasn't been an easy ride. Before the transplant, I was on a restricted fluid allowance on dialysis, and then suddenly I had to drink three litres after the transplant and I couldn’t do it. I'd get so bloated. People think once you’ve had a transplant you're cured of kidney disease, but that's not the case.
"It's been over eighteen years now; I've tried to take care of myself, but my transplant is starting to fail. I am gutted because I know what is round the corner. It isn’t the actual dialysis I’m worried about, it’s everything around it like changing my diet. I didn't cope very well last time, but I think this time I am more prepared.
"I have a little granddaughter who was two in December 2023, and a grandson who was four in June 2024. We go out for meals, and go shopping. I like spending time with my best mate, and I stay at hers every so often. I love doing volunteering – I am the cashier at a local charity shop, and I really enjoy that, it gets me out of the house. I want to stay as healthy as I can.
"Although I found dialysis hard, I met some nice people with the same condition. I chose in-centre because I wanted to be out of the house, meeting people at the unit. You can have a laugh. I got on well with everyone on my shift and they all loved my daughter too. We befriended an older guy who had lost his wife and two sons, so he took me and my daughter on as his grandchildren. We went to London Zoo, out for meals, we had him over for Christmas a few times. He was hoping I'd have my transplant when he was alive, but he died a year before it. I am always thinking of him, bless him.
"I am looking forward to meeting new people if I start dialysis again, but I hope it'd be in better circumstances. I’m just glad my kidney has lasted as long as it has."
"My advice to everyone who is diagnosed with kidney disease is don't be a miserable cow! At the end of the day, you can’t change what has happened, you have to get on with it. It'll be hard to start with, but you will get through. I take each day as it comes and if I can get through it, so can you."