My renal counsellor gets me through
Like so many other people, Alison Lawrence, 49, from Essex, had no idea she had kidney disease. Her condition, reflux nephropathy, was picked up by chance in her 20s after a health check at the gym showed she had high blood pressure.
For just over two decades, from 1997 to 2018, Alison managed her 40% kidney function and lived a full life with her husband Phil, 50, not worrying too much about what was around the corner. But then her kidney function started to decline rapidly, leading to Alison being put on the transplant list and having to start dialysis. Mentally, this has been hard to deal with, but fortunately Alison has had the help of a specially trained renal counsellor to support her through the dark times.
Alison says, “It’s no wonder kidney disease is called the silent killer. It’s possible to feel perfectly well and yet have kidneys that are barely functioning. I’d managed 20 years since diagnosis without a problem, which makes what’s happened in the past two years even harder to deal with mentally.”
Hopes for a transplant
Alison eventually took the difficult decision to temporarily close her marketing business. “Being on the transplant list I could get a call at any moment and then be out of action for months – I didn’t want to leave my clients in the lurch. I also thought I didn’t need the stress. It’s been tough as I’ve always associated a lot of my self-worth to my ability to work and earn money. But with the help of my renal counsellor I am working past this.”
Alison was put on the transplant list in January 2020, and pinned her hopes on getting one before her kidney function declined to the point she needed dialysis. “I found the thought of dialysis scary. But it wasn’t just the needles that worried me, it was losing my independence. I focused on all the things that would be harder to do, like travelling, or going to restaurants. Having a transplant seemed like the best treatment, while with dialysis you have a range of life-limiting options.”
Unfortunately her kidneys deteriorated rapidly and she couldn’t afford to wait for a transplant, so she opted for overnight automated peritoneal dialysis (APD) which involves being attached to a machine for eight hours a night. “The first night I did it, I remember crying my eyes out with my husband, saying to him, ‘This isn’t fair.’ But actually within a short time I found that it worked really well and I was absolutely fine.”
Sadly, tests in early 2021 showed the APD wasn’t dialysing as well as it could, so she switched to continuous ambulatory peritoneal dialysis (CAPD). A manual form of dialysis, this has to be done four times a day, and Alison found the switch tough. “We were in the middle of the winter lockdown which was a struggle for everyone, and I was so frustrated that I couldn’t get used to the CAPD.
Getting support
“That’s when I first contacted my renal counsellor Carole, and she was so helpful. As time has gone on, her support has become invaluable.
“Ordinary therapists are great, but Carole will understand all the nuances of what I am going through. My monthly call with her has been a lifeline. Being a kidney patient is lonely at the best of times, and even more so in a pandemic. Phil has been amazing, but I can’t dump everything on him, and that’s where Carole steps in.
“Who knows how to tell their family they need a transplant, or how to ask someone to be a donor? I can talk through all of that with Carole as she has specific knowledge of what it’s like to be on dialysis or on the transplant list.”
Carole’s support became even more invaluable when Alison developed peritonitis (an infection of the inner lining of the tummy) three times, and had to go on haemodialysis.
Emotional impact
“This has had a big impact on me emotionally as I’ve gone from dialysing in the safety of my own home and feeling in control of my health to having to go to hospital three times a week and lose a big part of the independence I had when I dialysed at home
“I was hospitalised three times, in August, October and then on New Year’s Eve. When this happens, you are taken off the transplant list temporarily as you are not fit enough to receive a transplant. That is hard to deal with in itself, but in October I was accidentally left on the list. During that time, the other hospital called to offer me a kidney. I was heartbroken – not only was I ill, on haemodialysis, but now I had to live with the knowledge I could have had a transplant.
“That was the first time I met Carole face to face. She came into the hospital to see me and helped me get through the trauma of what had happened.”
Alison says it can be hard to talk to medical professionals about mental as well as physical health. “The nurses in the dialysis unit are lovely, but when I’m there I try to put a brave face, and smile at the other patients and say hello.
“I’m suffering from depression and anxiety, and I’ve had some dark thoughts; thinking I will die before I get a transplant, feeling that my life isn’t worth living. But when you are on the machines, you don’t want to talk about wanting to end your life in front of the other patients because that’s distressing to them. It can be hard to talk to doctors too because sometimes they are not willing to answer questions. Instead, I think, ‘I can talk to Carole about this.’”
The importance of renal counsellors
The role of renal counsellors is also important because, as Alison explains, mental health issues can impact on physical health. “I can get anxious simply at the thought of going for a walk,” says Alison. “I have a sense of dread even though there is no real risk there. You feel mentally tired and sleep becomes an escape instead. But then you feel groggy, and can’t sleep at night, and everyone knows that’s the worst time for dark thoughts. It’s a vicious circle.”
The good news is, with Carole’s support, Alison is trying to embrace life again. “Two weeks ago, we went to London and saw a show, ate out and stayed in a hotel. It was scary – we thought long and hard about whether to go, but I’m vaccinated, I wore my mask and socially distanced, we were careful. It was great, a really wonderful weekend.”
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