I should begin by introducing myself. My name is Nikki Fretwell and I’m part of the patient expert team here on CKDExplained.
I’m currently one of the UK’s longest surviving, non-transplanted dialysis patients, having clocked up thirty-four years so far. I’m also the first dialysis patient worldwide to conceive and successfully give birth.
There are many chapters to my story and I’d like to share them with you over the coming weeks.
…..
It was December,1987. The Pet Shop Boys were at number 1 in the charts. In the September, I’d started 6th form college to study Art, English and Music. I’d always wanted to be a teacher.
It wasn’t going well. I was tired. Ridiculously tired. I couldn’t get up in a morning. In fact, I couldn’t get up in the afternoon either. I missed day after day of lessons, so got hauled into the office one day, and pretty much said I didn’t want to do it anymore. It was so out of character, but I just didn’t have the energy.
I got a job as an office junior with an insurance company in Nottingham on a YTS scheme but still, my attendance was poor. I was often ill. Tired. This really wasn’t like me. I’d fall asleep on the bus on the way home. I got unceremoniously fired after three months. So I found another job closer to home. It wasn’t a dream job by any stretch but it paid more and I enjoyed it.
I’d started noticing that my ankles were swollen at the end of the day. Quite badly, actually, so I went to the doctor. “It’s just your age,” she said. I was seventeen.
One day a team of us from work visited a local showroom to see some new products. The lights were dim, the room warm. I could feel myself .. falling. I woke up in the medical room. I’d fainted.
I went back to the doctors. The swelling in my ankles was up to my knees. The doctor weighed me, gave me a low-dose diuretic and told me to go back in three days. When I did, I’d gained half a stone.
“I think you might have Nephrotic Syndrome,“ he said. “You need to go to hospital. They’ll be expecting you.”
I went to Queens Medical Centre, a large, modern hospital close by. I was given another diuretic and a fluid balance sheet. After a few days a doctor came, looked at my fluid balance sheet and weighed me. “You must be lying, “ he told me. “There’s no way you’ve gained all this fluid on those diuretics. You must be drinking a lot more. I’m discharging you.” I packed my bag, stood up to leave and collapsed in the middle of the ward. I wasn’t discharged.
Instead, an ambulance transferred me to another hospital, Nottingham City, with a renal unit. It was an old, Victorian building with grubby wooden panelling. On my own and frightened, I burst into tears.
Suddenly this God-like image appeared. Over six feet, in a white coat with white hair and a long white beard. “Hello Nicola. I’m Doctor Morgan. I’m going to try and make you feel better.” He was so kind and softly spoken. I burst into tears again.
A biopsy revealed I had FSGS, an autoimmune disease which was attacking the nephrons (filters) in my kidneys. There was no cure.
I was there for four months.
Four months of vomiting. Drips. Needles and the oedema was awful. My poor heart was pumping over 30 litres of extra fluid around. I was on 1gram of Frusemide daily along with Amiloride and Metalozone (all diuretics), Ciclosporin (an immunosuppressant) and Chlorambucil (a chemotherapy drug). 60mg of Prednisolone made my bones soft and caused my fluid–stretched skin to tear open. Heparin injections twice a day. Drugs to stop the sickness. Drugs for all manner of things.
Nothing was working. I was leaking huge amounts of protein and still gaining fluid.
Dr Morgan, who was clearly a highly respected consultant, and I, developed a nice relationship. He had a daughter the same age. I challenged myself to ask him a question he couldn’t answer every time we met! On a Friday, I’d ask if I could go home but the answer was always, “not yet.”
I was started on intravenous Frusemide and Albumin (a protein). Things began to change. The fluid was disappearing. I was allowed home overnight at the weekend. It was May, 1989. I’d spent my 18th birthday there. I was finally allowed home with a cocktail of drugs, and an appointment for six weeks’ time.
I was back in four.
The fluid was back. I was vomiting constantly and couldn’t eat. Another cannula and IV Frusemide. I woke up after a few days and I was in so much pain. I couldn’t say where. A nurse pulled the curtains round and said she’d fetch Dr Morgan. He came, examined me and said, “you’re very poorly, young lady. I think you have renal vein thrombosis. Can you ask your parents to come and see me this evening?”
I lay there with the curtains closed around me and wondered if this was what dying felt like.
A venogram showed I had clots in my renal vein. IV heparin got rid of them fortunately; and after a month I was back home. I was weak, terribly thin and in a wheelchair.
The pattern continued. I’d have a month or so at home, and a month in hospital. I’d been on the transplant list a couple of years and had no luck. I’d had enough. I was twenty years old. My condition was unmanageable. There were no ‘stages’ of kidney disease and CKD wasn’t a thing in the 80’s. I’d heard about dialysis and knew it removed fluid. I had around 20% function and a fistula ready and waiting.
“Will I be better off on dialysis?” I asked. Doctor Morgan agreed, and said, yes I would. So, on 20th March, 1990, three years since my diagnosis, I had dialysis for the first time.
I’ve never looked back.
Last Reviewed on 26 June 2024