Having chronic kidney disease can be overwhelming at times, especially if you’re on haemodialysis. As well as feeling generally unwell and facing uncertainty about their health, people on dialysis often struggle to come to terms with what it means to have a fistula.
Your fistula enables you to have dialysis and as such, it keeps you alive. But fistula creation surgery leaves you with a noticeable scar, and when it’s been used for some time, a fistula can become enlarged and form unsightly lumps on your arm.
It’s not uncommon for people to feel embarrassed or self-conscious about it.
“Kidney patients get really good at accepting things, and they see their fistula as something they don’t have an option about,” says Kidney Care UK renal counsellor Sarah Vickery. “But it’s just another thing that makes them feel ‘less than’. And if their fistula gets bulgy and lumpy it’s not something they want people to see.”
In fact, the appearance of their fistula was highlighted as a top concern for patients who shared their perspectives online. People also noted worries about pain and bruising, blood vessels clotting or narrowing, and the potential impact on the heart of blood flow problems.
All of this adds to the often-harsh reality of life with chronic kidney disease and needing dialysis to survive. Whatever you’re feeling about your situation, talking about things can really help you to come to a place of acceptance.
Sharing your feelings about having a fistula
“Everybody has things about themselves that they don’t like, and when we try to hide them away and don’t acknowledge them, they become an even bigger issue,” Sarah says. “If you’re open about it and talk to people, it often becomes less of a big deal.”
Renal counsellors like Sarah work with patients at all stages of their kidney disease, from people who are newly diagnosed and are worried about the trajectory of their illness, to those who have had a kidney transplant and find it tough adjusting to new medication.
When you’re on dialysis, problems extend beyond the cosmetic appearance of your fistula. Counsellors can help with things like needle phobia, which can turn every dialysis session into a traumatic experience, among other things.
“We also deal with people whose fistula surgery has gone wrong, and they really don’t want another one,” comments Sarah. “If people are struggling, we encourage them to go back to their clinical team to talk through their options. A fistula is an option, but it’s not the only option.”
Renal counsellors can also help by talking to the clinical team about your concerns and helping you get the information you need to help you make decisions.
The vascular access nurses in your unit will spend a lot of time talking to patients and explaining fistulas and how they work and often have decades of experience. It's worth sharing your worries and concerns as the team may be able to help address them in the early stages.
AV fistula benefits for patients
A fistula is considered the best choice of vascular access for haemodialysis.
Typically, you get better dialysis which, in turn, keeps you healthier for longer. And there is a lower risk of infection with a fistula compared with a central line catheter.
There are other benefits a fistula has over other forms of vascular access, notably that it enables people to retain more of their ‘normal’ life. You can take part in exercise, bathe and swim, for example, without worrying about an external catheter getting in the way. And, because fistulas are associated with fewer problems like clots and infections, your treatment time is often lower.
Finding support to manage the challenges of dialysis
That said, it can be difficult to cope with the physical and psychological strain of life as a dialysis patient, and a fistula is just one part of that. If you’re finding things tough, you’re certainly not alone.
Some people find support online, through social media groups and platforms Kidney Care UK’s community on Facebook, where other people with kidney disease come together to share their experiences.
Many renal units have specialist counsellors you can talk to, but there are sometimes fairly lengthy waits to see one. Kidney Care UK’s free counselling service bridges some of that gap by providing expert support for people living with kidney disease and their families. “The service has come out of the need of kidney patients who need some psychosocial support, and acknowledging that you’re struggling and getting help is a really brave thing to do,” Sarah explains. “Kidney disease really changes how people see themselves. We help them to recognise that every little thing people take for granted is just that little bit harder for them – and ultimately that makes them stronger.”