Nick Palmer, Patient Ambassador & Involvement Lead at Kidney Care UK, shares his experience of nocturnal home haemodialysis (HHD).
At its core, I find that doing nocturnal HHD has resulted in my time being my own to enjoy. I have the flexibility to change my routine to fit in with my lifestyle and my plans.
“Home haemodialysis (HHD), especially nocturnal dialysis, has been transformational for me. HHD has helped reclaim my life clinically, socially, financially, and psychologically.
“First of all, HHD means I do not have to visit a hospital three times per week, so I can use that time to do the things I want. HHD has helped me to avoid becoming institutionalised and because I am in charge of my treatment, I feel fully empowered and in control of my own wellness.
"Because HHD lets me undertake more frequent or longer hours of dialysis, it is gentler on my body and increases my energy levels. HHD has reduced my 'peaks' and 'troughs' when dialysing, has improved the likeliness to have stable blood pressure, and reduces the impact dialysis 'hangovers'. Longer hours have improved my anaemia, stabilised haemoglobin, and reduced my need for iron and EPO therapy.
“I have found that my diet has also become more flexible due to HHD, and my appetite has improved. This has then positively impacted on social interactions and occasions, allowing me more freedom when eating out or with other people.
“At its core, I find that doing nocturnal HHD has resulted in my time being my own to enjoy. I have the flexibility to change my routine to fit in with my lifestyle and my plans. Dialysing at home is comfier, I have access to entertainment that I want, and I don’t have to be away from family or friends like I would be if I dialysed in hospital.
“All this contributes to a better quality of life which impacts positively on my physical and mental health.”
Kidney Care UK Trustee Maddy Warren explains how nocturnal home haemodialysis (HHD) has changed her life.
HHD has given me flexibility, freedom, and control. I feel happy, healthy, and very grateful for this life-saving technology.
“For me, home haemodialysis (HHD), specifically nocturnal HHD, is the absolute gold standard of dialysis. It is immensely patient-centric, and while not everybody is clinically suitable or wants to do HHD, I believe far more people are suitable to do it than currently do, and everybody should be given a true choice, proper education and equity of access to home treatment.
“I have been on dialysis continually for 26 years as I can't have a transplant. I began on overnight peritoneal dialysis (PD) as a young teenager, then changed to HHD after a failed transplant attempt at age 19. I quickly decided to do overnight nocturnal HD rather than using up my precious daytimes or evenings doing treatment, and also to access the significant clinical benefits it brings. HHD has allowed me to fulfil my potential and to live totally normally, doing all my dialysis solo without help or a care partner. Because I am able to dialyse four to five nights per week for six-plus hours while I sleep, my life is not dominated by a schedule. Nighttime dialysis removes any ‘dialysis hangover’ for me, allowing me to go straight to the gym in the morning after I’m off the machine, and then to work without giving dialysis another thought.
“The longer hours and shorter gaps between each gentle, slow treatment mean that I have none of the common dialysis symptoms such as nausea, itching, brain fog or fatigue. I have also seen a dramatic improvement and stabilisation of low blood pressure issues and dizziness compared to conventional HD (which is typically 4 hours, 3 times a week), and I never ‘crash’ on or after dialysis. I have no fluid or diet restrictions, a stable haemoglobin and far fewer anaemic episodes. It's like having an excellent functioning kidney but without the immune suppression required for a transplant.
“All my time is back in my control, with no travelling to a dialysis centre or having my life dictated by someone else's schedule. I also don't lose any time due to feeling unwell between treatments. I started dialysis whilst in school, so I was totally used to managing it all myself by the time it came to leaving home and getting my first job. I am lucky to have had an exciting and ambitious career so far, alongside lots of adventurous hobbies, from travelling and competing in skydiving to pushing the limits of physical fitness and endurance. To celebrate 20 years on dialysis, in 2018 I ran the London Marathon, which just shows how well you can be on nocturnal HHD. My positive experiences and good health have also enabled me to become an active advocate, peer supporter and campaigner in the dialysis community.
“HHD has given me flexibility, freedom, and control. I feel happy, healthy, and very grateful for this life-saving technology. Life on dialysis has taught me to live every moment to the full, find the positives and to be strong and resilient, it definitely teaches you perspective on what really matters.”
You can follow Maddy on Instagram, where she posts about her life on nocturnal HHD: @queenofdialysis
