Once I started dialysis in 1990, my life improved considerably.
After the last four years of struggling to manage my FSGS despite several hospital admissions, I was beginning to feel well again.
The dialysis machine fascinated me. It was a Gambro AK10; it had a little tube at the front which, if I ultrafiltrated to remove fluid, (something I needed to do a lot at the beginning) it would pour out into a jug in front of my very own eyes! Amazing.
I quickly learned how to set the machine up and wanted to know how it all worked. I wanted to know everything. I sat with three other patients of a similar age, although I was one of the youngest on the unit.
They gave me support and we had a laugh as well. For the first time in four years, I wasn’t alone. I had people around who understood. I made lifelong friends whom, sadly, are no longer with us.
My blood pressure was, and still is, a problem. I’d walk into the unit with 3 litres of fluid to remove and a BP of 60/40. Dialysis was different in the early 90s.
EPO wasn’t routinely used, intravenous iron hadn’t been introduced and the dialysate chemical was acetate, rather than bicarbonate based, which led to patients being unwell quite often. It was much harsher.
Hi-flux dialysers weren’t available- only ‘flat plate’ kidneys which were large, chunky rectangular things. I suffered terribly with cramps on dialysis, something not seen as commonly nowadays.
Nurses had to weigh patients half way through dialysis and would adjust their fluid removal targets: the machines weren’t volumetric, i.e. there was a lot of guess work based on needle pressures and pump speeds.
By the time I reached my 21st birthday, I was ready to dialyse at home. I’d learned to put my own needles in, which, actually, is a lot better than having someone else do it and nowhere near as bad as you might imagine. The house had been assessed and my partner came in once a week to learn how to connect me up and wash the blood back at the end.
I had a REDY machine. It was portable, sort of, and only needed tap water and a power socket. The parts were expensive though and it frequently broke down. Nevertheless, I was much happier at home.
I was okay with the restricted diet but fluid was always a problem. I’d say it was the hardest aspect of being on dialysis, especially with always having a naturally low blood pressure.
The general public had no idea about kidney disease; they still don’t, thirty years on.
People thought I was cured. “Oh, you’re better now, then,” they’d say, because I wasn’t going to hospital as much. Friends would invite me for dinner. They would make chips/a mushroom curry/ jacket potatoes; I was welcome to join them. “Oh, a bit won’t hurt, will it?” They’d say. They’d offer me a drink or a night out. I’d accept a ‘small one’ and my cup of tea would be half my daily fluid allowance.
I had to say ‘no, thank you’ a lot. And with no Internet to speak of in the early 90s, I couldn’t show people any information to explain things and I got tired of repeating myself. My friends stopped calling and gradually, I lost touch with them.
I’d only been dialysing at home a few months, when I got the shock of my life. The impossible had happened. I rang my home dialysis nurse immediately and said, “Are you sitting down?!”
I was pregnant.
At that time, although a handful of dialysis patients had got pregnant, none had resulted in a successful birth. None, anywhere in the world. I was both excited and terrified. Dr Morgan, my wonderful, kind consultant, said I might consider a termination but it was out of the question. “Starving women in Africa have babies,” he smiled, “so if anyone can do this, you can.” That was his only advice.
He referred me to a colleague, an excellent gynaecologist, and for the next six months, I had fortnightly scans to see if the baby was growing normally. I had to dialyse every other day religiously to keep my creatinine down within safe levels. I had morning sickness all day, every day (I weighed less at the end of the pregnancy when I was ‘heavy with child’ than I did before I got pregnant!)
Then I fell ill. I was in agony. I was being violently sick. I was rushed to the renal unit by ambulance.
The situation was life-threatening for both me and my unborn child. There was a suggestion I might have renal vein thrombosis again, but because I was pregnant, I couldn’t have all the necessary tests and scans. I was put on a morphine drip and I drifted in and out of sleep, while my family stood by, anxiously.
About a month later, I woke up one morning to see Dr Morgan and the gynaecologist standing over me. “We can’t wait any longer. We think you should have a cesarean section. Tomorrow.”
I was only seven months pregnant. It was too soon.
The following afternoon I gave birth by elective cesarean to a boy. He weighed just 2lbs. He was unbelievably small and covered in white hair. He was perfect. I’d just had a baby! No other dialysis patient in the world had achieved that before.
Daniel was transferred to the special care baby unit immediately. He couldn’t maintain his own body temperature and needed a feeding tube. I just needed a rest.
We both remained in hospital for a month. I felt strangely alone. I’d had no ante-natal classes, no midwives, nothing. The nurses on Maternity didn’t understand why I didn’t want to sit in the dining area with the other mums.
I wasn’t offered a renal diet at all so I just didn’t eat. Instead, I’d go in a wheelchair to sit with my tiny baby who was wrapped up in an incubator. I knew I would never give up fighting to live my best life at this point.
Daniel became my ‘reason for being’ from that day on.
I recovered from the mysterious illness and Daniel got stronger every day. Our story made the newspapers and BBC news did an interview. Even now, nurses introduce me as ‘the lady that had a baby’! It’s still extremely rare.
Having a baby and being on dialysis was hard. Really hard. I was completely exhausted. All new mums are exhausted but this was something else. Luckily, Daniel slept through much of the first two months. We had to wake him up for four-hourly feeds.
My Health Visitor arranged a placement for him in a local nursery two days a week and a Home Help; a lovely lady called Avril who helped with cleaning and ironing. What a godsend.
Over the next couple of years, I had a new fistula because my first one developed a dangerous-looking aneurysm, and had a parathyroidectomy. Why? My phosphate and calcium levels were uncontrollable.
By the time Daniel started school in 1998 I was back having hospital dialysis, after a brief, horrible experiment with Peritoneal Dialysis because my second fistula had clotted. I despised CAPD (Continuous Ambulatory Peritoneal Dialysis) and the exit site from the tube (which hung from my abdomen where I connected bags of dialysate) was permanently infected.
I was back on dialysis at hospital just a few months later with a tunnelled line (a catheter in the chest) for a year, then my third fistula operation in 2000, which still works to this day.
Dan was thriving well at school; much smaller than his peers due to being so premature but he was clever and popular and funny. I saw an opportunity there too … the school wanted Parent Helpers.
I loved being a parent helper and got a lot of experience. But I wanted more than that. I’d always wanted to teach. I knew I could never work full time as a classroom teacher but the government was offering funding for people with disabilities a two-year course for newly created Teaching Assistant roles.
The staff encouraged me to go for it. What was I waiting for? I’d take my laptop to hospital to study while I was on the machine. Dr Morgan said I should do a full teaching qualification but I knew my limits.
By 2005 I was back in paid employment as a Special Needs Teaching Assistant.
Dialysis wasn’t going to stop me.
Dialysis didn’t stop me doing anything for the next ten years.
Last Reviewed on 26 June 2024