From insights on living with different treatment modalities, to problems created by poor physician-patient communication and long-term psychological challenges, kidney care physicians heard a range of perspectives from dialysis patients during two recent conferences—the Vascular Access for Hemodialysis Symposium (VASA; 9–11 June, Charleston, USA) and UK Kidney Week (UKKW; 7–9 June, Birmingham, UK).
One such perspective was offered by Lorin Jackson, who discussed her experiences on peritoneal dialysis (PD), as well as both home and in-centre haemodialysis (HD), with Mark London (Dialysis Access Institute, Orangeburg, USA) at VASA 2022. “For me, PD is the best-case scenario,” Jackson said. “It gives me the most flexibility and freedom, and it is more gentle, whereas HD is really intense and can make you very tired.”
She also noted that PD can be done nocturnally, allowing her to wake up, disconnect and go about her day after dialysing overnight, while she found HD to be more limiting, requiring greater time and effort. “I would argue that, sometimes, it felt like a full-time job, and I really did feel like I was my own nurse,” Jackson said, also relaying difficulties she experienced on HD, including an arteriovenous graft occlusion, learning how to cannulate—which was “awful”—and fainting.
“It was always really scary if something went wrong with HD,” she added. “There was a lot of blood, and it was overwhelming. But PD is not like that. It is much more controlled and contained, and it feels safer and more manageable for me.” Jackson relayed that, with some adjustments, she is still able to travel for work, volunteer and focus on her religion while on PD—concluding: “You just have to make it work for you.”
One common theme across the VASA programme was the need for improved physician-patient communication. Dialysis patients Fred Hill and Lissette Ramos-Multani both highlighted this when detailing their own experiences—with Hill calling for “true education” on how each modality will impact a patient’s life. He noted that, beyond simple explanations of how fistulas and catheters work, “it needs to be more about how we live our lives” on dialysis.
“The focus is often on how your dialysis is going, but not how well you are living.”
“The focus is often on how your dialysis is going, but not how well you are living,” Hill added. He also said some form of mental therapy may have helped him overcome issues with self-confidence, and a loss of identity, when he started dialysis. These difficulties, according to Hill, are even harder to cope with alongside the fear of dying from kidney disease. This point was stressed by Ramos-Multani too, who told the audience: “When you say ‘end-stage kidney disease’ to a patient, to them, that means they are dying. That is the beginning of their depression.”
Another message emphasised by patients throughout VASA was ‘no one told me’, with Ramos-Multani saying that a lack of vital information creates even more uncertainty for the patient. “People are going through all sorts of emotions, from fear to denial, and I think trying to overlay information on that emotional fog creates that poor communication,” one physician averred. “The message I am hearing is that our community needs to do much better when it comes to communicating and reinforcing these things—because they are obvious to us, but not to the patient.”
The long-term psychological toll these treatments can take on a patient featured prominently at UKKW, with nocturnal HD patient Nikki Fretwell drawing on the 30-plus years she has spent on dialysis. Fretwell detailed her experience of living in denial, to some extent, and refusing to let dialysis define her for many years before succumbing to “total burnout” and seeing a renal psychologist. “We talk about tiredness, exhaustion and fatigue,” she said, “but, for me, these words are not powerful enough to describe it.” Fretwell also alluded to putting off everyday tasks until tomorrow, but feeling like “tomorrow never comes” due to a constant lack of energy while on dialysis.
Struggles relating to self-worth and independence, as well as a desire to live life to the full in spite of dialysis, were among other overarching messages here. “I was so determined to be normal that I ignored all my symptoms, and never told anyone how I felt or how hard life actually was,” Fretwell continued, but went on to add that, more recently, she has learned to accept help from others and acknowledge her limits. “Your life is the priority, and dialysis gives you that life,” she stated, addressing fellow dialysis patients. At VASA, Hill concluded with a similarly positive outlook: “Dialysis is the battery that means you can live—so go and live! And, understand that it is a second chance at life, and a part of your life, but it is not your whole life.”