As it should be and as it really is.
As noted in a previous article, home haemodialysis (HHD) is a technology that needs to be learned, but once you have learned the set-up and disconnection procedures it is generally usable. But some aspects of use are difficult to remember: for example, remembering to open or close all the clamps when connecting to or disconnecting from the machine. If you think about what difficulties you have experienced, maybe you can find a way to avoid them in future: for example, organising the supplies for a session in a way that makes it obvious when something has been forgotten, or finding a systematic way to remember all clamps, or to mark the connectors. What other ideas, or tested strategies, do you have?
Most patients regard their HHD machines as 'idiot proof'. But several of the participants in our study reported incidents where they had been unable to solve a technical problem in a timely way and had had to disconnect themselves without being able to pump all their blood back (so some of it was lost). One recounted how he'd tricked his machine into allowing him to pump his blood back when he'd used dialysate that was too old and the machine had stopped working. Other people recounted incidents where they had improvised (e.g. taping up broken tubing or using a hairdryer inside the machine) to make it possible to dialyse at all, because the machine's safety barriers were blocking dialysis. You have choices: to respect the machine design and work with it, accepting that that may mean having to delay dialysis (and you know how that makes you feel) or to lose blood. In some situations, though, you have to make trade-offs between dialysing (and feeling better) or waiting (and maybe staying safer). To make informed choices in such situations, you need to understand the consequences of the choices that you're making, which in turn means understanding in depth how the machine works. You can't learn that overnight, but you can keep learning as you dialyse, and share your learning with others in similar situations. You can learn from incidents that other people experience as well as ones you experience yourself; you can also learn from your home care team and other resources. What strategies do you have for learning and for making informed choices? Do they work well?
Everyone who took part in our study had developed strategies for staying safe. A key one was diligent hygiene for infection control. Other strategies included:
- avoiding distractions while setting up dialysis
- getting a family member to check the set-up
- anticipating problems with power supply (e.g. during a storm) or with water supply (e.g. when someone was about to do a load of laundry) and avoiding dialyzing then
- giving a key to a neighbour (or leaving it on the windowsill to throw down to a neighbour)
- keeping a mobile phone within reach (with a list of emergency numbers)
What strategies have you discovered that work for you? How can you share them?
Participants reported adopting short-cuts, mainly to reduce the time that dialysis takes. And one had her dialysis machine set up on her verandah, so that she could dialyse in a pleasant place. Quality of life matters too.
HHD enables people to live their lives more fully, and have much more freedom than people who have to visit a dialysis centre regularly. But it also places demands on people: not just to take responsibility for their own care and manage it on a day-to-day basis, but also to troubleshoot when anything goes wrong, and to make informed choices between actions that prioritise safety and ones the prioritise quality of life. To make informed choices, you need to understand the choices you are making. Do you know what those choices are, and how you making the best possible choices for you?
This article is based on research that has recently been published at http://www.biomedcentral.com/1471-2369/15/195/