Breast cancer survivor’s battle on dialysis
Lancashire resident Helen Rogerson (52) has lived with kidney disease all her life, but a recent experience with breast cancer hastened her journey to kidney failure, forcing her to move from full time to part time work for the NHS.
When she was 15, living in Kettering, Helen was diagnosed with hydronephrosis – a condition where a build-up of urine causes the kidneys to stretch and swell. She had been having frequent urinary tract infections but this condition was manageable initially.
“When I was about 19 there was a sudden turn,” she says. “My blood pressure went up, my creatinine was sky high, everything was up and I had a further investigation. And that’s when they found my bladder wasn’t emptying properly.”
Inevitability of kidney failure
Helen was told deterioration would be inevitable and that she would eventually face kidney failure – a hard thing for a teenager to hear. But for 30 years she defied the odds and was able to manage her condition with long-term prophylactic antibiotics to prevent recurring UTIs, and long-term blood pressure tablets to help her cope with the additional strain on her cardiovascular system caused by her poorly kidneys. Whilst her kidneys were slowly declining, frequent check-ups helped ensure her condition was monitored and her medication adjusted when needed.
By 2021, now living in Fleetwood with husband Andy, Helen’s kidneys had continued slowly deteriorating and she began to contemplate more serious treatment options. Then she faced a double whammy. She was diagnosed with breast cancer and warned that the chemotherapy could be particularly bad for her kidneys.
The damage was done
“My kidneys did struggle, and ultimately failed, but I’m still alive so there we go,” she says.
Coming out of chemotherapy and then radiotherapy, she was given the all clear for breast cancer. But the damage was done and having had to have six months off from her role as an NHS administrator, Helen’s return to work was cut short as she needed to go on dialysis.
Helen says: “The main thing I was struggling with was fatigue. I was getting to the stage where I was sleeping every day during the day as well as at night.
“I had cut down my working hours to four days a week previously but then dropped to three days a week, then two and a half days a week. But it was really hard to do the job. I was mainly saving my energy for work and just sleeping the rest of the time, which is not a great way to exist. And I had shortness of breath – once I got onto dialysis I could feel the difference.”
Feeling like life had gone
Helen opted for peritoneal dialysis – where the toxins and waste in the abdominal cavity are flushed out using fluid which is pumped in and out through a catheter. At first she was dialysing at home manually, four times a day, spending up to two hours including set up each time.
“I really did struggle with that,” she remembers. “It felt like my life had gone, that was my hardest time mentally. You’re constantly thinking. ‘Oh God, in another four hours I’ve got to do the dialysis’. I decided I couldn’t live like that. Some people are very happy doing manuals but it didn’t suit me at all, I wanted to have my days back.”
Helen switched to automated peritoneal dialysis, using a machine to dialyse overnight, each night of the week. Whilst this now works better for her, it’s not been an easy transition.
She explains: “I set up at about 10pm each night and finish at about 6.30-7am. Although you are supposed to be able to sleep through it, in reality, the machine is pumping fluid into your peritoneum, you hold it for an hour, then it drains it out. And it’s doing that cycle six times throughout the night. Every time it was pulling and doing the draining it was quite painful and it was waking me up. So that was hard. Then suddenly after six months my body was getting used to it and I could sleep through the cycles, not every night, but the majority.”
Gradual return to work
Having been too unwell to work for the last six months, Helen is now able to get back to the job she loves, albeit still on restricted hours.
“Once I had the operation I stopped work, she says. “I couldn’t cope with anything at that point. It’s a heck of a lot for your body to get used to. So I’ve only just started back to work last month. I think two days a week working from home will be my working pattern for the foreseeable.”
Helen is doing far better with her treatment and been able to return to her love of swimming and playing the church organ. But her hopes are now pinned on the even greater freedom that a transplant would offer, she just needs to be strong enough to get back on the waiting list.
Meanwhile, Helen’s determined that the charity’s report Kidney disease: A public health emergency makes both politicians and patients sit up and listen. Whilst the outlook had been even bleaker for Helen when she was first diagnosed, greater research investment and prevention strategies could make all the difference to people in her situation, so that progression to kidney failure is no longer inevitable.
“I’ve come through this journey, and that’s what’s really made me want to pass this information on. We need to stop people having to go through such tough treatment so they can continue to work and live life to the full.”